tag:blogger.com,1999:blog-50180920525113356112024-03-05T01:06:14.592-08:00Ivy's Two CentsYet another blog to add to the billion othersIvy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.comBlogger45125tag:blogger.com,1999:blog-5018092052511335611.post-50364675411156384492024-01-06T10:51:00.000-08:002024-02-12T16:24:23.196-08:00A Report by Ivy K. - End the Institutional Bias in Attendant Pay Rates<div style="text-align: left;"><span style="font-weight: normal;"><span style="font-size: small;">- Letter<br /></span></span><span style="font-weight: normal;"><span style="font-size: small;">- Individualized messages<br /></span></span><span style="font-weight: normal;"><span style="font-size: small;">- Recipients<br /></span></span><span style="font-weight: normal;"><span style="font-size: small;">- Picture<br /></span></span><span style="font-weight: normal;"><span style="font-size: small;">- Responses<br /></span></span><span style="font-weight: normal;"><span style="font-size: small;">- Results<br /></span></span><span style="font-weight: normal;"><span style="font-size: small;">- Video<br /></span></span><span style="font-weight: normal;"><span style="font-size: small;">- Final Thoughts</span></span></div><div style="text-align: left;"><span style="font-weight: normal;"><span style="font-size: small;"><br /></span></span></div><div style="text-align: left;"><b>Letter:<br /></b>December 27, 2022</div><div style="text-align: left;"><br />End the institutional bias in Attendant pay rates.</div><div style="text-align: left;"><br />I'm presenting a case for equity in Personal Care Attendants pay rates in this letter.</div><div style="text-align: left;"><br />The low pay of Consumer Directed (CD) in-home Personal Care Attendants has caused my husband not to return to work and is one of the factors of why I resigned from my full-time wage job of over 8 years.<br /><br /></div><div style="text-align: left;">Speaking as an Employee Of Record (EOR), for equitable access to Home and Community Based Services (HCBS), close the gap between minimum wage and living wage for CD in home attendants.</div><div style="text-align: left;"><br />What I've experienced/seen:<br />1.<br />Myself and others can not find Medicaid Consumer (self) Directed personal care in home attendants because they are not paid anything close to a living wage. A fast food job pays more than an in home Consumer Directed (CD) attendant job.<br />Solutions: Close the gap between minimum wage and living wage rates for Consumer (self) Directed Medicaid in home Personal Care Attendants. In Virginia the gap is $6.23. (as of 12/12/22) And/or remove penalties for supplementing a CD attendants pay so I the Employer Of Record, can compete with fast food, etc. To earn a LPN, require nursing school students serve as a CD in home attendant for 6 months.</div><div style="text-align: left;"><br />2.<br />Stop the split of CD attendant hours when services are through Agency Directed. The split in my CD attendant hours ensures an agency office administration gets paid in the instance when no attendant can be sent to my home. The split of hours was hidden from me when I repeatedly asked how Agency Directed would impact Consumer Directed. When an agency attendant does not come to work, a CD attendant can not submit those hours for payment even though they are doing the work of the agency attendant. Because of agency unprofessionalism and unethical behavior, their attendant turnover rate is extremely high. These agencies are numerous which deplete my hiring pool for a Consumer (self) Directed personal care in home attendant. Agencies have used my CD attendant hours to be paid when no attendant comes into my home.</div><div style="text-align: left;"><br />When there are one time payments (COVID19 hazard pay) agencies are in charge of getting payments ($1000) to their eligible attendants. Agency attendants may have no knowledge of and/or may not receive these payments because it is left up to the agency. Also agencies are not required to report which of their attendants receive these one time payments. Whereas CD attendants receive one time payments from time they have already submitted.</div><div style="text-align: left;"><br />3.<br />Bring back tools to empower people on Consumer Directed such as MySupport. Give individuals an option to pay for a subscription to MySupport to fund it so it won't be left up to the insurance companies to shut down. There was a long period of time in the past when placing a newspaper ad was affordable. The newspaper ad was $40 and ran for 7 days which resulted in around 50 people calling me for the job.</div><div style="text-align: left;"><br />4.<br />Data<br />Require survey and feedback opportunities be given to people who use Consumers Directed services and use the data in results/reports, etc. Inequities in attendant pay rates have impacted my quality of life and have impacted my employment goals.</div><div style="text-align: left;"><br />Equable data collection requires transparency. Inequitable attendant pay rates (currently hidden from the public) will show an institutional bias. There is an institutional bias in attendant pay rates because of America’s connection to capitalism.</div><div style="text-align: left;"><br />a. There is no equity in data collection. Correct this… Data is focused on Providers and not Consumers.<br />b. Correct this… The US Census does not collect any data specifically related to Home and Community Based Services (HCBS) providers or consumers.<br />c. Require public transparency. Publicly post the hourly pay rates of attendants in the categories:<br /></div><blockquote style="border: medium; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><div style="text-align: left;"><span style="font-family: inherit; font-size: medium;"><span style="font-weight: normal;">1. Consumer (self) Directed - Consumer Directed attendant pay rate ranks the lowest. <br /></span><span style="font-weight: normal;">2. Agency Directed - Currently, attendant pay rates are not required to be reported.<br /></span><span style="font-weight: normal;">3. Sponsored Residential<br /></span><span style="font-weight: normal;">4. Group Day Program<br /></span><span style="font-weight: normal;">5. Group Supported Employment</span></span></div></blockquote><div style="text-align: left;"><br />5.<br />American Culture<br />Systemic ableism is costing the non-disabled their valuable time. This possibly drives the urge to extreme profit off disability services. "Time is money." Which is more valuable to the non-disabled, their time or controlling people with disabilities? By design in policy, in too many of the situations the non-disabled are the gatekeepers to completing tasks (or not), that the disabled are prohibited from doing themselves. It's to the detriment of people with disabilities if the gatekeeper doesn't not complete tasks.</div><div style="text-align: left;"><br />Capitalism:<br />a. Private companies are allowed to buy group homes and nursing homes to make extreme profit off beds while unknown numbers of people with disabilities are abused and neglected to the point of death.<br />b. Group homes and agencies are allowed to pay more to their attendants than Consumer Directed. They are not required to report attendant pay rates.</div><div style="text-align: left;"><br />My choice and independence/freedom as an American is paying my CD attendant a living wage.</div><div style="text-align: left;"><br />Redirect funds to pay a living wage to Consumer Directed personal care in home attendants from these sources:<br />1.<br />Agency Directed office getting paid when their attendant doesn’t come in to work.</div><div style="text-align: left;"><br />2.<br />Transportation brokers getting paid for each person on Medicaid regardless if that person uses transportation or not (company hub in Georgia). 80% of the time Medicaid transportation fails to take or bring me back home.</div><div style="text-align: left;"><br />3.<br />Revenue from repetitive reviews, surveys, grants, reports. It's worthy to note these are performed by people without disabilities.</div><div style="text-align: left;"><br />4.<br />Repeated Evaluations - Eliminate evaluations to use funding on the DD Waiver. To qualify for the DD Waiver I had OT assessments and evaluations These repeated tests are an example of extreme profiling off disability services. (DD Waiver AT funding for a computer requires 6 months of OT)<br />There is OBRA funding, I don't know how long that's going to last or where it comes from. The OBRA funding is left up to City Council to approve or deny each request. Which leaves me dependent on them for tools I use to live in my community. <br />Why am I not held responsible for finding the lowest cost and submitting receipts for items/services covered by the DD Waiver?</div><div style="text-align: left;"><br />5.<br />Ableism in Healthcare - Due to ableism, I hear the excuse of the "fax is lost". I have heard it so many times from various entities, over so many years that I get another provider involved which essentially ends with charging insurance twice.</div><div style="text-align: left;"><br />6. </div><div style="text-align: left;">Change how insurance charges for physical therapy<br />a. My disability is not going to disappear overnight or improve. Do away with requiring documentation that states improvements for continuing Physical Therapy. To prevent fraud insurance can send me a proof of life form to notarize and ask me to verify the quality of my Physical Therapist annually.<br />b. Because Physically Therapy could not rehabilitate my left hip replacement 5 days a week from my home, I stayed in a costly nursing home for a month. At the nursing home the result was I didn't receive PT 5 days per week.<br /><br /><br /><b>Individualized messages posted on the coinciding letter:</b><br />Legislators: Which party will set aside capitalism (that is extreme profiting disability services) so I (and others) can have properly paid attendant care empowering my employment and quality of life?<br /><br /></div><div style="text-align: left;">Stacey Abrams: Redirect funds to pay CD in home attendants a living wage from transportation brokers getting paid for each person on Medicaid regardless if that person uses transportation or not (company hub in Georgia).</div><div style="text-align: left;"><br />Warren, Sanders, Wyden, Murray: What's the latest update on the BrightSpring/KKR acquisition?<br /><br /></div><div style="text-align: left;">U.S. Census Bureau: Collect and report on data from Consumers of Home and Community Based Services.</div><div style="text-align: left;"><br />Judge Gibney, Donald Fletcher: What is the total cost to date for the annual reviews on the U. S. Department of Justice’s Settlement Agreement with Virginia?</div><div style="text-align: left;"><br />Virginia Department for Aging and Rehabilitative Services: As long as people with disabilities remain unemployed, DRS staff will be employed.</div><div style="text-align: left;"><br />Healthcare recipients: To earn a LPN, require nursing school students serve as a Consumer Directed in home attendant for 6 months.</div><div style="text-align: left;"><br />VDOE, WJCC Schools: This is the outcome of Sp ED Preschool and of including me in K-12 classes. 1981-1997 in Williamsburg-James City County Public Schools. Regular Diploma.<br /><br /></div><div style="text-align: left;">U.S. Department of Health & Human Services recipients: What is the total number of people with disabilities that died from COVID19 in congregate settings? (group homes, nursing homes, etc)<br /><br /></div><div style="text-align: left;">Moms In Motion: I was employed by you for over 8 years. It was an honor to be in the founders club. Your leadership training strengthened the leadership qualities I already had. I was always a member of your team, I wasn't put on a pedestal or invisible. I was paid a full wage given opportunities for raises. At my job I found joy in showing people the way. This is my last effort in showing people the way. There's no retirement from ableism, but I'm going to pretend!<br /><br /></div><div style="text-align: left;">Pearl Jam: Thanks for encouraging me to use my voice when I was young at age 13 (1992), I'm now 43 years old. Thanks for the lyrics, thanks for the music.<br /><br /></div><div style="text-align: left;">WABC-TV, Geraldo Rivera: Willowbrook is still happening. Example: KKR, BrightSpring Health Services, etc.<br /><br /></div><div style="text-align: left;">Isabel Wilkerson: Is this caste or capitalism?</div><p style="text-align: left;"><br /></p><div style="text-align: left;"><b>Recipients:<br /></b>Mail: 117<br />Email: 1013<br />Social Media Platforms: 151<br />One tweet: 6,548 Views<br />News Outlets: 11<br />Link: Number undisclosed by Google</div><div style="text-align: left;"><br /></div><div style="text-align: left;">Mailed (in some cases multiple) individuals at:</div><div style="text-align: left;"><br /></div>
<div style="text-align: left;"><div>Local, State & Federal Legislators </div><div>Virginia House Appropriations Committee, The Honorable Barry D. Knight, Senator Tammy Duckworth, White House Office of Science and Technology Policy, Senate CMTE on Health, Edu, Labor & Pensions, Senator Bernie Sanders, Senator Patty Murray, Va Dept of Medical Assistance Services, Va Board for People with Disabilities, The Honorable John A. Gibney Jr., The Arc of the United States, The Arc of Virginia, National Council on Independent Living, Va State Rehabilitation Council, U.S. Department of Labor, Wilson Workforce and Rehabilitation Center, Va Beach Dept of Human Services, U.S. Bureau of Labor Statistics, Equal Employment Opportunity Commission, SEIU Virginia 512, Disability Rights California, National Council of State Boards of Nursing, Virginia Hospital & Healthcare Association, Sentara College of Health Sciences, Virginia Department of Education, Uni Cts 4 Excellence in Developmental Disabilities, DisDATA - Disability Data Advocates Taking Action, United States Dept of Health and Human Services, National Institute on Disability, Westchester Institute for Human Development, Ten Club, Eggleston Services, Hope House Foundation, The Consortium of Citizens with Disabilities, University of Kansas, Justice in Aging, Center for American Progress, Special Olympics, Michael J. Fox Foundation Parkinson's Research, Faith Inclusion Network, CBS Sunday Morning, Daily Press,Virginia Capitol Connections, StoryCorps, NPR WHRV / WHRO, WABC-TV & Geraldo Rivera, Institute for Women's Policy Research, Administration on Community Living, Virginia Senate Finance & Appropriations CMTE, Senator Bob Casey, Stacey Abrams, White House Office of Management & Budget, White House Office of Disability Employment Policy, Senator Elizabeth Warren, Senator Ron Wyden, U.S. Census Bureau, Va Dept of Behavioral Health & Devt Services, Centers for Medicare & Medicaid Services, Independent Reviewer- DOJ institution settlement, National Council on Disability, The Arc of Northern Virginia, Va Statewide Independent Living Council, Endependence Center, Inc., Va Dept for Aging and Rehabilitative Services, Ca Foundation for Independent Living Centers, United States Department of Labor, National Center for Health Statistics, Service Employees International Union, American Civil Liberties Union, Senior and Disability Action, Virginia Board of Nursing, My Care Coordinator for CCC Plus, Health Equity Dept at local Sentara Healthcare, Williamsburg-James City County Public Schools, Association of University Centers on Disabilities, Va Partnership for People with Disabilities, Administration for Community Living, Moms In Motion, Ford Foundation, University of Alaska Fairbanks, National ADAPT, Support Services of Virginia Inc., Brandeis University, Caring Across Generations, American Association of People with Disabilities, Diversability Leadership Collective, Christopher & Dana Reeve Foundation, Virginia Wesleyan University, Random House Publicity, The Virginian-Pilot, Richmond Times-Dispatch, Disabilities United Assoc - Disability News Wire, National Public Radio, WAVY TV 10 and WVBT FOX43 TV, Virginia Program Manager/Waiver Operations, Centers for Disease Control and Prevention, Va Provider Reimbursement Rate Setting Manager</div></div><p style="text-align: left;"><br /></p><p style="text-align: left;"><br /></p><div style="text-align: left;"><b>Picture included with each letter:</b> <br />Picture description - Female with blonde hair sitting in a power chair wearing a black shirt that reads, #EndInstitutionalBias I'm not your cash cow.</div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizM9IRnHfi9ZMn348njf1Bmc6J8_UIpvUrS1ujWOxoKmbKts3-utfcmeAOh6RErVKim0HTffTfstJX-jnuSdkB8SGaCOSG9H7Uf_Kr-gOqyCZbuwXfux3jB7S8VLLUUs8XD7W85cKm4Yi7xqxl7QiSzGYQuScQ1pbQydhLmp0SnuonF-IRqU68ywr7TqrN/s3422/IMG_0385.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3422" data-original-width="2444" height="551" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizM9IRnHfi9ZMn348njf1Bmc6J8_UIpvUrS1ujWOxoKmbKts3-utfcmeAOh6RErVKim0HTffTfstJX-jnuSdkB8SGaCOSG9H7Uf_Kr-gOqyCZbuwXfux3jB7S8VLLUUs8XD7W85cKm4Yi7xqxl7QiSzGYQuScQ1pbQydhLmp0SnuonF-IRqU68ywr7TqrN/w394-h551/IMG_0385.jpeg" width="394" /></a></div><br /><div style="text-align: left;"><br /><b>Responses:<br /></b>The Virginian-Pilot & Daily Press wouldn't print it because I had sent it in to other news sources making it not exclusive.<br /><br /></div><div style="text-align: left;">Emily Rosenoff<br />Director, Division of Long-Term Services and Supports Policy<br />Office of Behavioral Health, Disability and Aging Policy (BHDAP)<br />HHS Office of the Assistant Secretary for Planning and Evaluation (ASPE)<br /></div><div style="text-align: left;">My question: <br />U.S. Department of Health & Human Services recipients: What is the total number of people with disabilities that died from COVID19 in congregate settings? (group homes, nursing homes, etc.)<br />Answer:</div><div style="text-align: left;">That said, this brief by the Kaiser Family Foundation estimates the number of deaths from COVID of residents and staff in congregate settings as of February 2022. They estimate that 200,000 residents and staff had died from COVID as of January 2022.<br /><br /></div><div style="text-align: left;">Heidi Lawyer<br />Retired Executive DirectorExecutive Director<br />Virginia Board for People with Disabilities<br />Via Linkedin message: Very powerful. Thank you for sharing. I’m sorry you and so many others continue to suffer experience this. <br />My reply: Thanks for reading. Suffering? That's a word to put people with disabilities in their place.<br /><br /></div><div style="text-align: left;">Kylie Garber<br />Legislative Fellow, Health, Education, Labor, and Pensions Committee<br /></div><div style="text-align: left;">Senator Tim Kaine<br />We talked on a phone call for about 5 minutes. She asked near the end of our conversation what was the one thing I'd like to see done. My answer was to stop the split of CD attendant hours when services are through Agency Directed.<br /><br /></div><div style="text-align: left;">Senator Mark Warner<br />I received a letter in my mailbox. To summarize: My concerns (stated in my letter) fall outside the jurisdiction of the U.S. Senator.<br /><br /></div><div style="text-align: left;">Centers for Medicare & Medicaid Services, Department of Medical Assistance Services, Department of Behavioral Health and Developmental Services<br />A 45 minute online conference with two people discussing my letter. With regards to what my letter explained about Agency Directed services, I said I'd kept a timeline of what went on, no attendants sent to me, unprofessional behavior, etc. The two people in the conversation were interested so I emailed them the timeline. In my email I asked if they knew of any paid advisory positions to let me know. I included a link to my <a href="https://www.linkedin.com/in/ivy-kennedy-aaab8731/" target="_blank">Linkedin</a> profile to show my experience and worth.<br /><br /></div><div style="text-align: left;">Service Employees International Union (SEIU)<br />Email response on behalf of President Henry saying, "the International Union does not have the authority to interfere in or review the issues that you brought to our attention."<br /><br /></div><div style="text-align: left;">Michael Cutler<br />Division of Program Operations<br />Medicaid and CHIP Operations Group<br />Centers for Medicare and Medicaid Services (CMS)<br />He responded with an email. "each state sets its own rate for reimbursing a Medicaid-covered service provider, including Personal Care rates." <br />My response: Thanks for your reply to my letter. Then I summarized CD Service Authorization pends that resulted in no pay for my attendant for nearly three months.</div><div style="text-align: left;"><br /></div><div style="text-align: left;"><br /><br /></div><div><b>Results:<br /></b><u>Administration for Community Living</u><br /><br /></div><div>Email to acquaintances June 27, 2023: <br />Hello,<br />I'm sharing the interaction I've had from ACL. This communication was sparked by a letter I mailed in December 2022 about institutional bias in in-home attendant pay rates.<br />I believe ACL is earning extreme profits off of disability services. These profits could be redirected to pay Personal Care Attendants a living wage. I've also learned from this interaction that there are no groups representing/for Consumers at the Federal level.<br />Thank you,<br />ik<br /><br /></div><div>Angela Parker <br />Special Assistant for the Deputy Assistant Secretary Jennifer Sheehy at the Office of Disability Employment Policy<br />Her reply listed what groups have formed "to improve the quality of caregiving jobs as a priority and has recognized that increasing caregiver wages is critical to bolstering the caregiving workforce. As you noted from your own experiences, inadequate direct care staffing puts the health, safety, and well-being of people with disabilities at risk, and can lead to lost opportunities for employment and community participation"<br /><br /></div><div>I replied thanking her and asked how I, a Consumer could be a member of those groups. (in my mind I was thinking... I've tried to join these groups before. They haven't let me because that's how they earn a paycheck. I'm not voting for President again until Consumers are counted at the Federal level.)<br /><br /></div><div>My email to her:<br />Hello,<br />I have talked to employees of ACL via a national advocacy group I'm a member of, named disDATA. I have attended online meetings hosted by National Institute on Disability<br />Independent Living and Rehabilitation Research which as I understand to be a division of Administration for Community Living. From my perspective, the Administration for Community Living falls under "Profiting off disability services", which was listed under "Redirect funds to pay a living wage to Consumer Directed personal care in-home attendants" in my letter.<br />Thank you,<br />ik<br /><br /></div><div>Angela asked if I had called ACL. I asked what's the direct phone number for the Administration for Community Living’s Technical Assistance Center. I told Angela I do remember mailing my letter to Administration for Community Living’s (ACL) Technical Assistance Center. I have not heard back from them.<br /><br /></div><div>I asked (via email) Angela for the direct phone number for the Administration for Community Living’s Technical Assistance Center. I asked twice with 7 days in between.<br /><br /></div><div>On April 14 Angela said in an email to me, "Currently there are no consumer groups."<br /><br /></div><div>5/4/23 email:<br />Hello Angela,<br />Thank you for that information.<br />I called Administration for Community Living: (202) 401-4634<br />i pressed 5 for independent living research<br />i left a message with my phone number. I said I was a Consumer looking to get involved.<br />Regional office information I found at the link you provided. Please share with me the direct phone number for Laura House. I've reached out to my Administration for Community regional office. There was no phone number for Laura House on ACL's website so looked that up. I could not find it so I left a message with the office of the administrator by using the prompt at Administration for Community Living at (202) 401-4634<br />Laura House<br />Regional Administrator<br />801 Market Street<br />Philadelphia, PA 19107<br />I did not see a contact number or email address for Administration for Community Living’s (ACL) Technical Assistance Center at the link you provided. Please share their phone number with me and I will call them.<br />Can you please tell me if this resource center has formed? Or when the resource center will be formed? "ACL has awarded a cooperative agreement totaling an estimated $3.25 million over five years to create a national technical assistance and resource center that will improve support for people with co-occurring intellectual and developmental disabilities (I/DD) and mental health needs so they can live and participate in their communities" ACL Announcement from September 30, 2022.<br />Thank you for your time,<br />ik<br /><br /></div><div>4/19/23<br />Lauren Piraino <br />Advisor to the U.S Commissioner on the Administration on Disabilities<br />Lauren Piraino replied to the link to my letter via Linkedin message. She emailed me too. In my email reply to her I said, "How can I, a Consumer get involved at the federal level? Currently, data collection doesn't count Consumers. The US Census does not collect any data specifically related to Home and Community Based Services (HCBS) providers or consumers."<br />I followed up with Lauren on email. She did not answer my question. My question: How can I, a Consumer get involved at the federal level?<br /><br /></div><div>Lauren emailed me on 5/3/23 and asked me to email her at ********** I did and included my phone number.<br />I called her the next day. I use the number included on her email signature. She called me back, we spoke. She also said not to call her at that number.<br /><br /></div><div>6/27/23<br />Still no answer from Lauren Piraino. I've emailed her four times.<br /><br /><br /><u>The State</u><br />I accepted an invitation to join a workgroup. The workgroup’s title is DD Systems Issue Resolution Workgroup (DDSIRW). DDSIRW is a workgroup hosted by Department of Behavioral Health and Developmental Services that gives recommendations to Department of Medical Assistance Services. <br /><br /></div><div>My comments I have given during Developmental Disability Systems Issues Resolution Workgroup (DDSIRW) - Subcommittee System Transformation Workgroup (SIRW) meetings:<br /></div><div>November 17, 2023<br />DMAS and the General Assembly’s budget determine attendant pay rates.<br />Please explain why PCA/DSP (Personal Care Attendants / Direct Support Professionals) pay rates are different in the 5 care settings? Also please explain why the Consumer Directed in-home attendant pay rate is the lowest of the 5?<br /><br /></div><div>Michelle Guziewicz said at the June 27, 2023 DDSIRW subcommittee SIRW meeting how many Consumers there are ... there are around 16,000 Consumers in Virginia. Fund a report to show how many Consumers have hired a Consumer Directed attendant (who lives outside the home) by using annual data going back ten years. Use this data to end inequitable / institutional bias attendant pay rates in the 5 care settings and support redirecting funds to continuously pay Consumer Directed in-home personal care attendants the same or more than what a fast food employee earns.<br />I’m asking because the reports I’ve seen are in favor of getting Providers funding and no reports in favor of Consumers.<br />What I’m ultimately asking for is representation of/for Consumers.<br /><br /></div><div>During a Service Authorization pend, do not stop attendant pay for something the Consumer / Employee of Record is not at fault for, instead stop payment to DD Waiver Support Coordinator and Service Facilitator for that one Consumer.<br /><br /></div><div>Consulate the tasks of<br />- CCC Plus Care Coordinator<br />- DD Waiver Support Coordinator<br />- Service Facilitator<br />into a job for one person. Redirected the saved revenue towards a living wage for Consumer Directed in-home personal care attendants.<br /><br /></div><div>When Consumers report to The State (DBHDS, DMAS) of a CCC Plus Care Coordinator, DD Waiver Support Coordinator, Service Facilitator, Agency Directed Provider not doing their job, dock that persons pay and redirect that money towards paying CD in-home attendants at least the same or more than what a fast food employee earns.<br />This can be verified on a web portal.<br /><br /></div><div>Stop the split of hours when a Consumer is receiving attendant services through Agency Directed so the option is open for Consumers to have their Consumer Directed attendants paid for hours worked when there is an absent Agency Directed attendant.<br /><br /></div><div>Put in place a procedure for when Consumers report to The State (DBHDS, DMAS) on dates an Agency Directed attendant doesn’t come in to work, and tell the Consumer what action has been taken.<br /><br /></div><div>What will the purposed surveys for Customers to fill out be used for? Will survey results be public? (rating Providers survey. mentioned during last meeting)<br /><br /></div><div>As long as there’s an institutional bias within the system of in-home care, I as a person with a disability I cannot in good conscience continue to be a member of this group.</div><div>In terms of disability, when control is taken away by a higher caste, from a lower caste that lower caste is abused and/or often dies.<br />Institutional bias generates revenue for the non-disabled while simultaneously forcing people with disabilities downwards in an ableist system to our deaths.<br /></div><div>I resign from DDSIRW/SIRW.<br />Please remove me from your email lists. Thank you.<br /><br /></div><div>September 19, 2023<br />What input/recommendations given by the members of this group been submitted to DMAS?<br /><br /></div><div>Michelle Guziewicz said at the June 27, 2023 DDSIRW subcommittee SIRW meeting how many Consumers there are ... there are around 16,000 Consumers in Virginia. Fund a report to show how many Consumers have hired a Consumer Directed attendant (who lives outside the home) by using annual data going back ten years. Use this data to end inequitable / institutional bias attendant pay rates in the 5 care settings and support redirecting funds to pay Consumer Directed in-home personal care attendants, at least $15 per hour.<br />I’m asking because the reports I’ve seen are in favor of getting Providers funding and no reports in favor of Consumers.<br />If the number of Consumers are known, during a Service Authorization pend, stop payment to the Service Facilitator and DD Waiver Support Coordinator for that one Consumer. Do not stop payment to a Consumer Directed in-home attendant during a pend.<br />What I’m ultimately asking for is representation of/for Consumers.<br /><br /></div><div>Consulate the tasks of:<br />- CCC Plus Care Coordinator<br />- DD Waiver Support Coordinator<br />- Service Facilitator<br />into a job for one person. Redirected the saved revenue towards a living wage for Consumer Directed in-home personal care attendants.<br /><br /></div><div>Employee of Record and/or Consumers to be reported back to on what was done when they submit to the DMAS on what dates Agency Directed attendants don’t come into work.<br /><br /></div><div>Stop the split of hours when a Consumer is receiving attendant services through Agency Directed so the option open is there for Consumers to have their Consumer Directed attendants paid for hours worked when there is an absent Agency Directed attendant.<br /><br /></div><div>When a Service Authorization is put on pend, attendant pay stops. The State has 30 days to review one pend. There can be multiple pends. Shorten the 30 days to 7. For me, this happened two years in a row. My CD attendant did not receive pay for two months. Do not stop attendant pay for something the Consumer / Employee of Record is not at fault for, instead stop payment to DD Waiver Support Coordinator and Service Facilitator for that one Consumer.<br /><br /></div><div>DD Waiver Support Coordinator needs to give the Consumer documentation of everything funded by the DD Waiver because this documentation is needed at times and the DD Waiver Support Coordinator and/or the State can’t find it.<br /><br /></div><div>A web portal for all involved would be helpful but is not a guarantee for the Consumer that the people in charge do their job so Consumers have no gap in attendant services. If designed to, one of the many uses of a web portal should also include a function to decrease audits.<br /><br /></div><div>July 27, 2023<br />Michelle Guziewicz said how many Consumers there are at the last meeting...There are around 16,000 Consumers in Virginia.<br />Can a report be funded to show how many Consumers have hired an attendant (who live outside the home) by using annual data going back ten years. This data will be used to show the requirement to end inequitable attendant pay rates in the 5 care settings and to show that funds must be redirected to pay CD in-home attendants at least $15 per hour.<br />I’m asking because the reports I’ve seen are in favor of getting Providers funding and no reports in favor of Consumers.<br /> If the number of Consumers are known, during a Service Authorization pend, stop payment to the Service Facilitator and DD Waiver Support Coordinator for that one Consumer. Do not stop payment to a Consumer Directed in-home attendant during a pend.<br />To go with my comment ... What I’m ultimately asking for is representation of/for Consumers.<br /><br /></div><div>What I remember saying out loud during the meeting:<br /></div><div>On the purposed Training Academy, pay Consumers to train Attendants. Consumers/ Employees Of Record train already Attendants for no cost. I’ve used Agency Directed attendants off and on for over twenty years. They had training, certification, etc .... those things made no difference in the quality of care.<br /><br /></div><div>It can be important to ask people with disabilities to share their story though the non-disabled who ask need to be aware of exploitation and burnout.<br /><br /></div><div>A web portal for all involved would be helpful but is not a guarantee for the Consumer that the people in charge do their job so Consumers have no gap in services.<br /><br /></div><div>June 27, 2023<br />Are the suggestions we gave and were then noted in a spreadsheet going to be included in the June 2023 review?<br /><br /></div><div>What type of verification process will the State have so Consumers can sign off on submitted Agency Directed hours? How will EORs/Consumers be reported back to when they submit to the State what dates Agency Directed attendants don’t come into work? are there penalties for agencies when they bill for time when no attendant was sent?<br />(Stop the split of hours when a Consumer is receiving attendant services through Agency Directed so the option is there for Consumers to have their CD attendants paid for hours worked when there is an absent Agency Directed attendant.)</div><div><br />Stop pay to the Provider for that one Consumer during Service Authorization pends. What’s the minimum amount of days a Service Authorization is reviewed again after a pend? Is there a maximum amount of pends, if so what is that?<br /><br /></div><div>How many Consumers are in Virginia?<br /><br /></div><div>"each state sets its own rate for reimbursing a Medicaid-covered service provider, including Personal Care rates." said Michael Cutler - Division of Program Operations Medicaid and CHIP Operations GroupCenters for Medicare and Medicaid Services (CMS)<br />2/28/23 Quote in an email to me.<br />From that quote my question is:<br />The attendant pay rates increase with how the care setting most resembles an institution. What will DMAS and DBHDS do to make attendant pay rates equitable for full access to Home and Community Based Services / Olmstead Decision?<br /><br /></div><div>Fast food employees earn $15 per hour compared to 12.70 for CD attendants. As an Employee of Record I need to supplement $3 per hour to find and retain quality attendants. I’m worth $15 per hour, my care and my attendants are worth $15 per hour.<br /><br /></div><div>April 28, 2023<br />As a Consumer I ask for a way to see what hours Agencies bill to Medicaid. Currently I don’t know if Agencies are being paid for hours not worked. Currently, Consumers aren't given an opportunity to verify that agencies are billing for the correct amount of hours.</div><div><br />Instead of stopping attendant pay during a Service Authorization pend(s) stop pay to the Provider for that one Consumer.</div><div><br />What can give Consumers control during an annual Service Authorization? State the reason for a pend to the Consumer. (accountability on submitted on correct date, transparency for reason for pends, etc)<br /><br /></div><div>Shorten the Service Authorization pend from 30 days to 7 days. Pends result in no attendant pay.<br /><br /></div><div>Is this group a part of CMS Proposes Rule to Improve Access to and Quality of Medicaid Services?<br /><br /></div><div>Count Consumers too.</div><div><br />March 21, 2023<br />Please share “ideas that might alleviate administrative burden for providers”, Todd Cramer March 10, 2023 DDSIRW email.<br />As a Consumer as well as the Employee of Record, I ask the State to change three policies to lessen administrative work load:<br />1.<br />State reason for Service Authorization pends and shorten the 30 days to 7 days. (Currently, a CD Service Authorization cannot be resubmitted 30 days after it was pended.) Transparency on the reason for the pend(s) will give insight immediately to Providers on what corrections are needed administratively. Reasons stated for each pend will save administration time for Service Facilitators.<br />For me, the current "30 day rule" has resulted in no attendant pay for three months which leaves me, the Consumer vulnerable to an institutional care setting. (two consecutive pends resulted in no attendant pay from January 9 2023 to March 17 2023) To prevent Systemic Ableism, if it’s policy to stop attendant payment due to a pend, then the State should stop being paid for the duration of a pend(s) as well.</div><div><br />2.<br />Stop the split of hours when a Consumer is receiving attendant services through Agency Directed. This would save time for the DD Waiver Support Coordinator because no “split hours” administrative work would have to be done. This would also ensure for the Consumer that Agency administrators are not being paid for hours when no attendant is sent to the home. This change also leaves the option open for Consumers to have their CD attendants paid for hours worked when there is an absent Agency Directed attendant.</div><div><br />3.<br />To lessen administrative work for Employees of Record, close the gap between minimum and living wage for Consumer Directed in-home attendants. This would alleviate attendant turnover rate for Consumers, thus decreasing the Employee of Record’s new attendant registration packets being received and processed (administrative work) by Fiscal Agents.</div><div><br />What I remember saying out loud at the March 21, 2023 online meeting:<br />- Respite should go to the attendant of Employee Of Record's choice. Currently respite is only for the Unpaid Primary Caregiver. To have an Unpaid Primary Caregiver as a requirement for CD services is not Independent Living for a person over 18 years old. </div><div>- Bring back MySupport.com. Cover costs by Consumers and Employers Of Record paying for a subscription. MySupport.com was a custom matching online system that gave both Attendants and Consumers recommended matches by asking both people questions about their support preferences and values.</div><div><br />No matter what changes are made by the State, this will remain:<br />- Providers and the State will be paid<br />- Consumers will not be paid (Which in Western Culture equates to people with disabilities have no worth, no value but to be a paycheck for Providers if Providers see it's worth their time. This social construct also explains why Todd Cramer used the word "burden" in his March 10, 2023 DDSIRW email.)<br /><br /><br /></div><div><u>Peer Driven Media</u><br />Disability Media Wire / Disabilities United Association published my letter.<br /><br /><br /><br /><br /><b>My Video:<br /></b><a href="https://youtu.be/_UAfZgtRKEM?si=BwUzcts2-_YTsb32" target="_blank">https://youtu.be/_UAfZgtRKEM?si=BwUzcts2-_YTsb32</a><br /><br /><br /><br /><b>Final Thoughts:</b><br />If Home and Community Based Services (HCBS) was dismantled with no institutional bias my Consumer Directed Medicaid in-home Personal Care Attendant would earn a living wage and my husband would return to work. The law says nursing homes are mandatory, where in-home care services are optional and left up to States to decide on. This results in an ableist system which generates revenue for the non-disabled while simultaneously forcing people with disabilities to our deaths when a congregate care setting becomes our only choice.</div><div><br />1923 (TV Series) <br />Episode: The Rule of Five Hundred (2023)<br />Harrison Ford as Jacob Dutton<br />Jacob Dutton: There's this theory that these scientists came up with after studying tribes in India and Africa and South America. The smaller tribes didn't have any government, didn't need any. They could sit down and talk out their problems. Decide where to plant crops, to hunt. It was just a big family, really. But when the number of people got up around 500, because there wasn't any government, the strongest people would take advantage of the weakest. Every time, without fail, they would enslave, rape, steal. Enrich their lives at the expense of other people's lives. Government's man's way of trying to control our behavior, but it can't be controlled. It's what we are. Sooner or later, the kind of people that would enrich themselves at your expense will use the government to do it. And mark my words, one day they'll create laws to control what we say and how we think. They'll outlaw our right to disagree. If we let 'em.</div><div>Further research because I couldn’t find that scientific study, "We are built to cooperate but we can also use that cooperation against others. Intensification (is when higher population density drives your need to manipulate your situation). To scale up a society you’re trading off your freedom for the efficiency of operating the society. It’s not necessarily better for the people involved but it’s what allows the society to function. Scaling up opens the door for hierarchy (government, caste, etc.)." Vivek V. Venkataraman said on podcast "What Can Hunter-Gatherers Tell Us About Our Origins? Going Beyond the Bestsellers ~ Vivek V. Venkataraman"</div><div><br /></div><div><br /><br />Alternative Link:<br /><a href="https://docs.google.com/document/d/1ZiGpDMH0MUseVmQ1PR2JFYauVFXSaVjyQhUduhQquhY/edit?usp=sharing" target="_blank">https://docs.google.com/document/d/1ZiGpDMH0MUseVmQ1PR2JFYauVFXSaVjyQhUduhQquhY/edit?usp=sharing</a></div><div><br /></div><div>.</div>Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com0tag:blogger.com,1999:blog-5018092052511335611.post-42747544290235722152023-08-14T08:16:00.001-07:002024-01-23T09:50:40.673-08:00How much is Virginia's GDP tied to extreme profiting off disability services?<div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">Last August, I was asked to edit my comment for The Arc of Virginia’s State Convention Luncheon. </div><div dir="auto" style="font-family: inherit;">Here’s my unedited comment:</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">What <span style="font-family: inherit;"><a style="color: #385898; cursor: pointer; font-family: inherit;" tabindex="-1"></a></span>I repeatedly see is policy that allows extreme profiting from disability and inequitable delivery and utilization of Home and Community Based Services. </div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">There is a genocide being covered up in America. People with disabilities are being murdered in group homes. Case in point, private group homes owned by KKR are under investigation currently. I'm waiting to see who will get convicted of murder with a life sentence in prison.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">There are three things happening in America:</div><div dir="auto" style="font-family: inherit;">1.</div><div dir="auto" style="font-family: inherit;">People like myself can not find Medicaid Consumer Directed personal care in home attendants because they are not paid anything close to a living wage. A fast food job pays more than a in home CD attendant.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">2.</div><div dir="auto" style="font-family: inherit;">Private companies can buy group homes and rack in extreme profit off beds while people with disabilities are abused neglected and murdered. Group homes are allowed to pay more to their attendants than Consumer Directed. Remove penalties for supplementing a CD attendants pay so I can compete with fast food and group homes. Close the gab between minimum wage and living wage rates for Consumer Directed Medicaid in home Personal Care Attendants.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">3.</div><div dir="auto" style="font-family: inherit;">Agencies can start an attendant business anywhere and have lack regulations. Because of agency's unprofessionalism and unethical behavior, their attendant turnover rate is extremely high. The agency is paid when their attendants do not come into work, which is Medicaid fraud. These agencies are numerous which deplete my hiring pool. Shut down agencies and bring back tools to empower people on Consumer Directed such as MySupport.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">Make it clearly known and easily found for the public, the pay rates in a hourly format for attendants working as Consumer Directed, in home agency and group home.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">My husband can not return to work with the current state of in home attendants.</div><div dir="auto" style="font-family: inherit;">I once worked from home and was paid a full wage. One of the factors of why I resigned was the current state of in home attendants.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">I'm on a conveyor belt of a broken system with no choice but a group home to be a fat paycheck in somebody's pocket.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">Close the gab between minimum wage and living wage rates for Consumer Directed Medicaid in home Personal Care Attendants. In Virginia the gap is $7.</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">END INSTITUTIONAL BIAS. DO IT NOW!</div></div><div class="x11i5rnm xat24cr x1mh8g0r x1vvkbs xtlvy1s x126k92a" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">How much is Virginia's GDP tied to extreme profiting off disability services?</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div dir="auto"><span style="font-family: inherit;"><a class="x1i10hfl xjbqb8w x6umtig x1b1mbwd xaqea5y xav7gou x9f619 x1ypdohk xt0psk2 xe8uvvx xdj266r x11i5rnm xat24cr x1mh8g0r xexx8yu x4uap5 x18d9i69 xkhd6sd x16tdsg8 x1hl2dhg xggy1nq x1a2a7pz xt0b8zv x1qq9wsj xo1l8bm" href="https://www.facebook.com/hashtag/hcbs?__eep__=6&__cft__[0]=AZVNBYxon_vZUT8p2pw9SF1x7ft5Jg3dxXWkqvG4xPOHXZe8x11NSs3bXV1rnkqu7YiAgIvHdZt5XHJCkVCh0Oud67yDMClx4r9uAS8KRlc1UnSUwoDyqgSssxYBTG-4b1TNikRaOjpT6rUTK0U4QqqzyYzDUeynwSjNCTFvW7lszQ&__tn__=*NK-R" role="link" style="border-color: currentcolor; border-style: none; border-width: 0px; box-sizing: border-box; color: var(--accent); cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: currentcolor; padding: 0px; text-align: inherit; text-decoration: none; touch-action: manipulation;" tabindex="0">#HCBS</a></span></div><div dir="auto"><span style="font-family: inherit;"><a class="x1i10hfl xjbqb8w x6umtig x1b1mbwd xaqea5y xav7gou x9f619 x1ypdohk xt0psk2 xe8uvvx xdj266r x11i5rnm xat24cr x1mh8g0r xexx8yu x4uap5 x18d9i69 xkhd6sd x16tdsg8 x1hl2dhg xggy1nq x1a2a7pz xt0b8zv x1qq9wsj xo1l8bm" href="https://www.facebook.com/hashtag/endinstitutionalbias?__eep__=6&__cft__[0]=AZVNBYxon_vZUT8p2pw9SF1x7ft5Jg3dxXWkqvG4xPOHXZe8x11NSs3bXV1rnkqu7YiAgIvHdZt5XHJCkVCh0Oud67yDMClx4r9uAS8KRlc1UnSUwoDyqgSssxYBTG-4b1TNikRaOjpT6rUTK0U4QqqzyYzDUeynwSjNCTFvW7lszQ&__tn__=*NK-R" role="link" style="border-color: currentcolor; border-style: none; border-width: 0px; box-sizing: border-box; color: var(--accent); cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: currentcolor; padding: 0px; text-align: inherit; text-decoration: none; touch-action: manipulation;" tabindex="0">#EndInstitutionalBias</a></span></div><div dir="auto"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio9XVTGVAGz46NDKemTbQFRGUI3WhJ_jsbzsntpZmTOQnfTYEa0wPyOPNIW4GmiNQzy6JP-rJGM3XlHNxUDhkFADh_CHy6q7IBB56-KcU9SRF6idgFulJ3n8ZuTD_0bnWAurBM4TKHcYsKzg1b13GXB0C6QGx2s1aIYh6SwG4IMK39fbPPe1oO9hGyE4x9/s3009/365174181_10159020496970780_7266334142842055801_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3009" data-original-width="1393" height="517" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio9XVTGVAGz46NDKemTbQFRGUI3WhJ_jsbzsntpZmTOQnfTYEa0wPyOPNIW4GmiNQzy6JP-rJGM3XlHNxUDhkFADh_CHy6q7IBB56-KcU9SRF6idgFulJ3n8ZuTD_0bnWAurBM4TKHcYsKzg1b13GXB0C6QGx2s1aIYh6SwG4IMK39fbPPe1oO9hGyE4x9/w239-h517/365174181_10159020496970780_7266334142842055801_n.jpg" width="239" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS7sWF1IiGuZDDphoYwNIftCAtBnC6L-O31aJX90NgmCNUJQqkPXkyDaOtsD1VtepEYHfNhxLKNvb9mDXJEW_vC31JOGGYWc1zOVrmpTuAiuuZ7vI0wm_ytVl7YbhlfrMKSFPzp9P_2uuqjnpw2Istvj2Ro_psn9kxe0Jh-HBcpCQzmPc_XV090v8h0Vcj/s881/364106177_10159020496940780_2727031975517151530_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="489" data-original-width="881" height="178" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS7sWF1IiGuZDDphoYwNIftCAtBnC6L-O31aJX90NgmCNUJQqkPXkyDaOtsD1VtepEYHfNhxLKNvb9mDXJEW_vC31JOGGYWc1zOVrmpTuAiuuZ7vI0wm_ytVl7YbhlfrMKSFPzp9P_2uuqjnpw2Istvj2Ro_psn9kxe0Jh-HBcpCQzmPc_XV090v8h0Vcj/s320/364106177_10159020496940780_2727031975517151530_n.jpg" width="320" /></a></div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><br /></div>Thank you to <a href="https://disabilityalmanac.com/fighting-the-disability-industrial-complex/" target="_blank">Disability Almanac</a> for publishing this on their website.<br /><div dir="auto"><br /></div></div></div>Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com0tag:blogger.com,1999:blog-5018092052511335611.post-18069239942603053062021-03-03T12:56:00.012-08:002021-11-28T13:46:46.719-08:00US Department of Justice Left Their Job Unfinished in Virginia<p>COVID19 has exacerbated systems that were already broken. In my example, my Medicaid Consumer Directed services that pays my Personal Care Attendants have never been paid close to a living wage, health benefits, etc. What that translated to during COVID19 is I could not find any attendants to assist me in my home. I have gone for 5 months without an attendant. When I sign up with agency services, attendants have an extremely high turn over rate. <br /><br />I also work from home, so if i don't have an attendant to get me out of bed, I also can not clock in for work. <br /><br />In Virginia, attendants in group homes are paid more than attendants assisting individuals in their own homes. On January 26, 2012, a Settlement Agreement was reached to address the US Department of Justice findings that the Commonwealth of Virginia failed to provide services to individuals with disabilities in the most integrated setting appropriate to their needs as required by the Americans Disabilities Act and US Supreme Court’s Olmsted Decision. This resulted in closings of institutions, but then group homes were built that were smaller versions of the institutions that the US Department of Justice said the state had to close. <br /><br />If the US Department of Justice requires Virginia to honor the US Supreme Court’s Olmstead Decision that states Virginia must provide community-based services, why are group home attendants paid more than attendants who assist individuals in their community (at home)?</p><p>Stop incentivizing (paying more) for serving people with disabilities in institutional type settings, such as group homes. The setting of where an individual receives attendant services should NOT dictate pay rates. </p><p>End institutional bias by paying in home attendants a living wage. Support policy that shows equity in access to Home and Community Based Services (HCBS).<br /><br />My video I use to advocate:<br /><a href="https://youtu.be/r5FTCZIe9bA">https://youtu.be/r5FTCZIe9bA</a><br /><br />Report: Rethinking Direct Care Job Quality:<br /><a href="https://phinational.org/resource/would-you-stay-rethinking-direct-care-job-quality/">https://phinational.org/resource/would-you-stay-rethinking-direct-care-job-quality/</a><br /><br /></p>Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com0tag:blogger.com,1999:blog-5018092052511335611.post-45256158434463648812021-01-10T12:17:00.004-08:002021-11-28T13:44:07.211-08:00Donald J. Trump<p>Trump showed America again and again he had a Personality Disorder<br /><br />Speak out when you see bad behavior.<br />Trump had violence at his campaigns, he mocked people with disabilities, tons of women spoke out that he had/has sexually abused them. All are which are bad behavior. Speak out when you see bad behavior. Set boundaries.<br /><br />We had all the signs, yet Trump was not stopped. Why did the Republican party let him run for President? Why wasn't there a reform of the Electoral College? Why does Congress allow bad behavior? (all those hearings) <br />Trump stirred up violence/hate and further divided America. Freedom of speech doesn't mean stoop to limbic brain and risk getting shot by the violence Trump stirred up. Don't keep falling for Trump's Narcissistic Abuse tricks. Also police reform now.<br /><br />I got free of my abuse, just in time to watch America go through the same type of abuse.<br /><br />DO NOT LET IT HAPPEN AGAIN!</p><p><br />June 9, 2020 Posted to Facebook:<br /><br />When I was in a state of trauma, sitting in a hotel after my home was destroyed I was in total despair because I knew wasn't going to win the narcissistic battle that is my mother. She came into the room and starting raving how terrible is was that Trump had become president. I thought to myself, you should be thrilled because he is just like you.<br /><br />I know how narcissists divide people because I had watched my parents do it in many types of ways. I believe the divide in this country has been there since we sent Britain packing, maybe even before then. Some leaders unite, while others....<br /><br />Just as I became to know the truth about my 35 years of narcissistic abuse, I believe Americans will listen to each others truths to end racism. You will believe one another, hold each other accountable to poor behavior, etc. Because that's one reason why I'm healing ... my circle of support holds me accountable. <br />(P.S. Get rid of the Electoral College to give a choice to each American.)</p>Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com0tag:blogger.com,1999:blog-5018092052511335611.post-16924472878473250962020-09-21T06:46:00.004-07:002020-09-21T06:56:14.550-07:00Create a bill that ensures Personal Care Attendants earn a living wage #EndSubminimumWage<div style="text-align: left;">Create a bill that ensures Personal Care Attendants earn a living wage #EndSubminimumWage</div><div style="text-align: left;"> </div><div style="text-align: left;">Are you going to create a bill that ensures Personal Care Attendants earn a living wage? <br /><br />Did you know Attendants are paid less than a fast food employee? <br /><br />I can not find an attendant and without one I can not get out of bed or clock in for work at home. <br /><br />Paying subminimum wage must end now. My care and contribution to society is worth paying an attendant a living wage.<br /><br /></div><div style="text-align: left;"><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/r5FTCZIe9bA" width="320" youtube-src-id="r5FTCZIe9bA"></iframe></div><br /><div style="text-align: center;"><br /></div><br />Watch my #WhatWeNeed video:<br /><a href="https://youtu.be/Scd8PQjqe6k">https://youtu.be/Scd8PQjqe6k</a><br /><br />Email me to join the movement to end subminimum wage. View email address <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyEDSDlv-S_I_UCDd9jq5ywYRqc9vxVqu_IUmO0vp1zfm2emV7Z3fXm9LMss7xfJLJ6BAE7Fo2fppOBO1Jdo9NprtBDJfecmvcoiogo9sP9EaqF9thTkrF8P2JdEVm1eo2XPDx0VufOok/s1600/contact_image002.jpg" target="_blank">HERE</a><br /><br />#VirginiaCARESforDD<br />#WeAreEssential<br />#WhatWeNeed<br />#DoYourJob<br />#GetBackToWork <br /></div>Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com1tag:blogger.com,1999:blog-5018092052511335611.post-90307849348475913792018-06-09T11:52:00.001-07:002021-06-03T18:30:31.454-07:00Into The Wild - Child AbuseMay 4, 2018<br />
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i need write a blog about Into The Wild but i'm moved so much that i don't have the words. my brother brought the book home from college and i'd never read a book so fast, i read it in 2 days. i get mad when people say Christopher McCandless was stupid for going out there by himself to die. he didn't, he did it to heal himself. ...from <a href="https://docs.google.com/document/d/1z59yf5zMwzgUFn_ma_L-rLE78W6nv6qm_7jBKnK3hxc/edit?usp=sharing" target="_blank">childhood abuse. I get it because I'm a survivor too.</a> the amazing thing is, is if he hadn't died, his story would've not been shared. Carine lives ***. she has a daughter with a disability. Eddie Vedder did the soundtrack for the movie. ... (that news was released after i read the book) Into The Wild touches my soul. I got a free Into The Wild poster from when i went to go see it at ***. I lost that poster in the flood. I should replace that poster, because as I look at it on the wall, it reminds me of so many things ... don't be afraid, try new things, discover what is true in life ... sharing joy with others is what's it's all about. It dawned on Chris about sharing joy right before he died.<br />
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Inclusion of people with disabilities (young and old) in their community<br />
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May 15, 2011<br />
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Friends and health are the two most important things many different cultures say. I knew friends were the most important by the time I hit 8th grade. Into the Wild (book) reminded me of that a few years ago. MAKE SURE YOUR KID HAS FRIENDS! Any shared interest can start a friendship. All of us need friends.<br />
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.Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com0tag:blogger.com,1999:blog-5018092052511335611.post-7115002760125467302018-02-22T14:32:00.000-08:002018-03-26T13:14:32.703-07:00Bullying is Tied to the Lack of Delayed Gratification<div class="separator" style="clear: both; text-align: center;">
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Yes! Somebody (kinda) finally said it! Grow a pair of balls. Let it bounce off you. Why is stuff that i grew up with, that was self installed, is now some big new thing thing that requires it to be taught? Like the other day i saw a video of a mom teaching the pros on making kids wait. I was floored for the same reason. It sure is a different world now.<br />
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In my day it was calling teasing. It helped my friends stick up for one another Also it helped us to bond. Teasing, along with being included in regular classes, taught me there are nice people and mean people. Teasing taught me to choose to be around the nice people. That is one of the biggest lessons that i value. i might go far enough to say my childhood teasing, is a tiny part of why I’m still here today. It made me tough, it made me aware. It was my earliest memories of studying human behavior. You have to know human behavior to survive and thrive.<br />
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I do believe though, hurtful words hurt as bad as being punched.<br />
You can protect yourself against words if you do it correctly. <br />
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Kids need to know one bad apple doesn't mean the world hates them and they should give up. (Delayed gratification! what-do-ya-know, my comment has come full circle)<br />
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Then again, when I was a kid I never had another kid threaten to kill me via a text message. So what do I know?<br />
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. Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com0tag:blogger.com,1999:blog-5018092052511335611.post-10190136833068115352015-09-09T09:13:00.000-07:002015-10-25T13:58:54.272-07:002015 National Independent Living Conference in D.C.<span style="font-family: Arial,Helvetica,sans-serif;">July 26-31, 2015<br /><br />I was excited. A week with so many others that share a passion for disability advocacy and rights. …. in the big city too? Wow, this is going to be amazing!<br /><br />I’ve never been to a National Independent Living Conference (NILC) so I was overwhelmed. I really didn’t the hang of it until mid week. I heard the conference had booked hotels in that block. I was grateful to have stayed at the actual hotel of the conference. The beautiful <a href="http://www.ivykennedy.com/blog/2015NILC/hyatt.jpg" target="_blank">Grand Hyatt</a> was amazing. The design of our ADA room got my approval too!<br /><br />Rumor had it that this year was much bigger in terms of the number of people that where there. There was a huge increase of youth attendees than there had been in the past. Makes sense right? 2015 was the 25th Anniversary of the Americans with Disabilities Act (ADA). This was the year of Generation ADA!<br /><br />Monday I attended a workshop on reforming the definition of Social Security. The panel was excellent. The jist of the workshop is similar to my <a href="http://ivys2cents.blogspot.com/2011/09/why-current-perceptions-and-policy-on.html">blog entry</a>. The way Social Security is currently totally undermines a persons mind and spirit. Rather than giving supports for employment, a young person has to surrender their determination to become employed and abandon hopes of leading independent lives in order to receive benefits. <br />At the Annual Meeting of the National Council on Independent Living in July 2014, a delegation of approximately 700 individuals with disabilities passed a <a href="http://www.advocacymonitor.com/ncil-resolution/reform-of-the-definition-of-disability-in-the-social-security-act-used-to-award-disability-benefits/" target="_blank">resolution</a> urging NCIL to push for a redefinition of disability as it relates to the Social Security Act. <br /><br />The first night we all gathered to hear speakers. Two that were most memorable to me were, former Senator Harkin and G. H. W. Bush’s grandson, Pierce Bush. (George H. W. Bush signed the ADA into law on July 26, 1990) A short <a href="http://www.prnewswire.com/news-releases/president-george-hw-bush-calls-americans-with-disabilities-act-one-of-his-proudest-achievements-in-new-video-commemorating-the-25th-anniversary-of-the-ada-300115252.html" target="_blank">interview</a> was shown of Tom Ridge interviewing George H. W. Bush earlier this year. Bush called the ADA one of his "Proudest Achievements". The activities that night were a perfect way to celebrate the 25th Anniversary of the ADA.<br /><br />The second day there was a briefing on the march to the Capitol and meeting with our Representatives. I made sure to listen up for that, even though it was hard because some of us were spilling out into the hallway. I was glad there was a teleprompter to read. A good example of how one device geared towards aiding one disability helps us all.<br /><br />The march to the U.S. Capitol to talk to our Representatives was empowering. We lined up on the sidewalk with our state. I heard there were 1,400 people on the <a href="http://www.ivykennedy.com/blog/2015NILC/march1.jpg" target="_blank">march</a>. The motorcade was ready to assist us in practicing our freedom to rally, which a great feeling. The march took much longer than it took the day before when Brian and I walked to the White House and then the National monument. (The White House had so many different trees. I would’ve like to learn where they came from and who brought them over. I love trees.) We took Pennsylvania Avenue to the lawn by Capitol. There were people running up and down to line to check if we were okay. They also kept us with chanting phrases such as, “Nursing homes have got to go! Hey-hey Ho-ho!” A paratransit taxi cab that passed by a couple of times gave us some encouraging honks. Brian saw one driver flick us off and make a u-turn at a stoplight because he was tired of waiting to cross. So exciting! There on the lawn, we had lunch and listen to speakers “Rally the Troops”. The huge Justin Dart float was there. It remind me when I was there years ago for a <a href="https://www.facebook.com/media/set/?set=a.10150295055120780.331780.658970779&type=1&l=f62e553ead" target="_blank">My Medicaid Matters</a> rally and his REAL hat was up on stage. <br />The two most memorable moments from lunch on the lawn were when <a href="http://www.ivykennedy.com/blog/2015NILC/duckworth.jpg" target="_blank">Congresswoman Tammy Duckworth</a> and <a href="http://www.ivykennedy.com/blog/2015NILC/sanders.jpg" target="_blank">Senator Bernie Sanders</a> spoke. Every now and again a speaker would ask us to move closer to the stage, I found that funny. We had wheeled, walker, scootered, canned in 90 degree July heat, some of us were medically fragile …. no way were we moving out of the shade into the blazing sun. Ha! There were a few up by the stage though. I remember Michael from Arkansas up there waving the ADAPT flag. He was so proud to do that. *<br /><br />The third day was the resource fair, awards luncheon and the NILC’s Annual Council Meeting to vote for new board members. At the luncheon I remember a Japanese man using a wheelchair and his PCA sitting at our table. They were using ear buds to interpret what was being said on stage. Earlier that week, I tried speaking with another pair of guys from Japan. They had some use of English so that was good. One award winner I took note of was <a href="https://youtu.be/uHU5iozdOPg" target="_blank">Jensen Caraballo</a>. He was a young man that received an <a href="http://www.ivykennedy.com/blog/2015NILC/Yaward.jpg" target="_blank">award</a> for advocating hard to get himself out of a nursing home. At the council meeting each person who wanted a board position gave a speech, or had somebody read one if they were not present. This part of the meeting was very interesting to me. Being a member of the <a href="http://www.vasilc.org/" target="_blank">Virginia Independent Living Council</a>, I thought I was allowed to vote, but when I was in line to receive my voting card they did not issue me one. The speech given by a young women I thought was best. Maybe it was the conference theme was Generation ADA that she was elected to a <a href="http://www.ivykennedy.com/blog/2015NILC/board.jpg" target="_blank">NILC board</a> seat, but I thought it was very fitting. <br /><br />I attended a workshop on Parking Equity. It was a presentation on a report that had been done on an experiment done on accessible parking in Kansas. It was intriguing to me because as a ramp van user it seems people don’t know what the signs on the parking spots mean. (<a href="http://www.ivykennedy.com/2006/05/07/commentary/" target="_blank">Read</a> my commentary that was printed in my local paper about this issue.) The pair of women conducting the experiment survey two parking lots at peak usage hours. They documented on things such as who used what spot, ramp vehicles or non-ramp vehicles. They tried four different signs to indicate a ramp vehicle parking spot. Each sign had different results. The goal of this was to discourage non-ramp vehicles from parking in the spot designated for ramp vehicles. </span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><a href="http://www.ivykennedy.com/blog/2015NILC/ParkingEquity.pdf" target="_blank">This study</a> found that alternate signage for van-accessible parking spaces can prompt drivers of vehicles without ramps or lifts to use a regular accessible space when available, reserving the van accessible space for Ramp/Lift-Equipped Vehicles (RLEV) users.<br /><br />I also attended a workshop on the next generation of Long-term Services and Supports. The workshop panel discussed the current Medicaid long-term support structure and how it effects this generation and the next. The shift is toward community inclusion, so big things are happening with the <a href="http://momsinmotionsblog.blogspot.com/2014/06/new-home-and-community-services-rule.html" target="_blank">new ruling</a> from Centers of Medicaid Services. It was a packed room. The panel was great. Andy Imparato was a panelist and I got my <a href="http://www.ivykennedy.com/blog/2015NILC/andy.jpg" target="_blank">picture</a> taken with him afterwards. One of the coolest things about NILC was the chance to meet advocacy rockstars that I’ve been following for years online! Emily Ladau also recognized me from online at her <a href="http://www.ivykennedy.com/blog/2015NILC/SMWorkshop.jpg" target="_blank">social media workshop</a> she led with Maddy Ruvolo. <br /><br />That evening there was a social. it was so much fun! A Virginia co-board member and I sat together. At the table with us, were a mother and son which I saw at the Capitol Ale Brewery during lunch earlier that week. There was also a very funny man with has wife and daughter. He was making me laugh so much! <a href="https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=video&cd=1&cad=rja&uact=8&ved=0CB0QtwIwAGoVChMI5-_Bk7bqxwIVxck-Ch2lWgvx&url=https%3A%2F%2Fvimeo.com%2F118048054&usg=AFQjCNEHmtAI3HsJ5xnvK8U6QkSp9BKz0A&sig2=H92MVNopXLlVuYYUPX0omA&bvm=bv.102022582,d.cWw" target="_blank">Kayla, the Disabilities Youth Ambassador</a> spoke. I was moved and felt hope for the future as I listened to her <a href="http://www.ivykennedy.com/blog/2015NILC/kayla.jpg" target="_blank">speech</a> coming from her communication device. Women that were all the way from <a href="http://www.ivykennedy.com/blog/2015NILC/japan.jpg" target="_blank">Japan</a> were handing out fans and packets of soup to the women. I thought that was so sweet. We took them out on the dance floor as a way of saying Thank You. <br /><br />One night <a href="http://www.ivykennedy.com/blog/2015NILC/brian.jpg" target="_blank">Brian</a> and I caught an elevator with the youngest NILC attendee, <a href="http://www.ivykennedy.com/blog/2015NILC/youngest.jpg" target="_blank">Peter</a>! It was such a thrill that week to meet and talk with people from <a href="http://www.ivykennedy.com/blog/2015NILC/yopic.jpg" target="_blank">New York</a>, Alaska, Arkansas, California and Japan!<br /><br />On the last day, there was a summary given by each state on what had happened during their meetings with Representatives or with their assistants. There were a wide range of responses people got, some excellent some not too hot. But hey, that’s politics. <br /><br />People who attended the conference used these hashtags during the week: #ADA25 #NILC2015 #GenerationADA #CIA4ADA<br />Our peers that couldn’t be there due to economic or health reasons were not forgotten about, they were mentioned many times. It humbled and reminded me why we were there, to advocate for others. This amazing week was a celebration of diversity, acceptance, advocacy and networking. A fellowship with advocates that left me feeling empowered and confident about the future! It was an honor to be there. <br /><br /><br /><br />* I missed getting to meet with my Representative, because were on a mad search for a restroom after the march and lunch. I did take a self guided tour of the U.S. Capitol museum (Exhibition Hall). When I returned home, I did manage to get a very short email conversation going with my Representative’s Legislative Assistant about the <a href="http://www.adapt.org/main.ciamain" target="_blank">Community Integration Act (CIA)</a>. <br />Watch Flip Polizzi’s <a href="https://youtu.be/4_l9ZgNi8qI" target="_blank">video</a> to his Representative about how CIA would change his life. I met and talked with Flip in one of the many lines waiting for the elevator down to the conference. He is far too young and has too much spunk to be trapped in a nursing home. </span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;">.</span>Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com0tag:blogger.com,1999:blog-5018092052511335611.post-63676285251874385262015-06-08T11:19:00.000-07:002016-02-13T13:03:02.752-08:00The Healthcare Business Need to be Bitch-Slapped by The Person-Centered Planning Superhero<span style="font-family: "arial" , "helvetica" , sans-serif;">I know this isn’t a disability community only related problem, though the disabled community routinely gets marginalized. Some people with disabilities' voices never get heard. By ignoring the expertise of the patient, the country is wasting lots of money. How can preventive medicine truly work when a patient's voice is ignored? EVERYBODY has suffered from this at one point or another.<br /><br />When considering these two situations think, why is the disability the #1 scapegoat? <br />Stop blaming the disability and keep your eyes out for double standards!<br /><br />1. Marcy, who has a Intellectual Disability (ID) lives in a group home and is moved to another. She starts acting out and is hard to handle. Her support staff are baffled because she has never acted this way before. They try correcting her behavior by removing her daily activities. Marcy really enjoyed and looked forward to them. By removing them Marcy’s behavior got worse and terrible things happened.<br /><br />- Turns out, Marcy did not like her roommates at the new group home. EVERYBODY has the choice of who they live with! Why didn’t Marcy?<br /><br />2. Ivy notices she’s starting to have hip pain. She tells her power chair Durable Medical Equipment Dealer (DMED). Instead of listening, nothing is done. Time goes on and her pain worsens 100 fold. She is sent to multiple specialists. She is either sent home with no relief, or sent to another specialist. Over a course of a year, Ivy sees the same Physical Therapist (PT) about four times. The PT is arrogant and Ivy concerns are ignored. Ivy has had passive muscle stretching all her life. The PT refuses to stretch her.<br /><br />- Ivy has had the chair for nearly a decade. EVERYBODY’s body changes with time. Even though there’s nothing wrong with the power chair, Ivy probably needs a new chair. (The PT recommend I go to a CHKD specialist. I ignored her for a change and saw a chiropractor. This will mark the second time I realized I’ll get <a href="http://ivys2cents.blogspot.com/2005/09/day-i-had-my-wisdom-teeth-out.html">better treatment</a> if I go to a doctor that the general public uses.) There is nothing special about being “Special”. The chiropractor saw me twice a week until my hip was better.<br /><br /><br /><br />* "Person-Centered Planning discovers and acts on what is important to a person. It is a process for continual listening and learning, focusing on what are important to someone now and in the future, and acting on this in alliance with their family and their friends" …. to improve quality of life.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">UPDATE: 2/13/16 <br />My hip is much better. Though the pain has moved into my back.<br />I still believe this could’ve been prevented.<br />I have found nobody who specializes in aging with Cerebral Palsy. EVERYTHING is geared towards kids. Also attitudes toward an adult with a disability compared to children is different and needs to change.<br /><br />I found an article that is for muscle strengthening. Which is what the PT refused to do. <br />All these exercises I remember from childhood. So what, are they EXCLUSIVELY for kids?<br />I started doing the hip extensors exercise and sit ups and they have helped tremendously. I continue to do the strengthening exercises from the Chiropractor. <br /> </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">But WHY "pediatric" and "rehab"?</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">What <span style="font-family: "arial" , "helvetica" , sans-serif;">exactly<span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></span>am I rehabbing from?<br /><br /><a href="http://www.ivykennedy.com/blog/StrengthTraining.pdf" target="_blank">Strength Training by Rehab Management</a><br /><br /><br />.</span>Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com3tag:blogger.com,1999:blog-5018092052511335611.post-37466548541570594472014-09-08T08:55:00.000-07:002014-10-10T13:54:46.631-07:00Local Special Education Committee - My Disability History Presentation<span style="font-family: Arial, Helvetica, sans-serif;">This is a speech I gave to a local Special Education Committee</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">(I also mailed a copy to all the area High School Assistant Principal and/or History Department Heads)</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Virginia has a resolution designating the month of October as Disability History and Awareness Month. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">I’m here to seek your help in gathering all students for my Disability History presentation. It’s about 30 minutes long. It’s a powerpoint. I also have on DVD.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I know this need to be an inclusive event. I have a few suggestions on how to do this:</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">- Work with history teachers to make coming to the presentation extra credit.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">- Have a $20 gift card raffle, Best Buy OR movies. I will provide the gift card.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">- Investigate how the ****** SEAC can advertise it to all students.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Maybe in morning PA announcement? </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Disability awareness is important but I feel that you can't necessarily teach someone how to feel towards one another. Though by teaching about the history of a group it will lead to respect, compassion, understanding and breaking stereotypes about people with disabilities.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Teaching Disability History to all students will promote inclusion and improve disability employment rates.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Thank you for your time.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">UPDATE: 10/3/14 </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">I did receive a tiny bit of interest from the SE Committee in the form of emails, but I was not invited to give my presentation. I heard from a source they did recommend it to the school board without the gift card suggestion.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Thanks to a <a href="http://ivys2cents.blogspot.com/2011/09/my-life-changing-experience.html" target="_blank">Partners in Policymaking</a> connection, I'll be presenting to two classes at a local elementary. <a href="https://www.facebook.com/ivy.kennedy/posts/10152330990875780" target="_blank">Click here</a> to read how it went.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">.</span>Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com0tag:blogger.com,1999:blog-5018092052511335611.post-34011867606197735612014-07-18T15:25:00.000-07:002014-08-15T17:59:35.824-07:00Ask Not What Your Country Can Do To Include You, Ask What You Can Do To Include Yourself In Your Country<span style="font-family: Arial, Helvetica, sans-serif;">I got nearly 100 likes on Facebook when I <a href="https://www.facebook.com/ivy.kennedy/posts/10152173125885780" target="_blank">posted</a> this, so I decided to Blog It!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I heard behind me at my local Recreation Center (pool) today,</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">“She can’t talk.” in a young sweet voice.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">I turned my wheelchair around and in a kind cheerful tone said, </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">“</span><span style="font-family: Arial, Helvetica, sans-serif;">Yes I can. How are you doing today?”</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">A few seconds went by, The four young girls started smiling. The staff person with them said they had went into the deep end of the pool.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">“Was it fun?” I said with a smile.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">They nodded and one of them said yes.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">I love kids, they say what is on their mind. so simple and without malice.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">All you have do is show up regularly. The general population will get used to you. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">it’s no big deal.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Relationships and even friendships might form. Wow, what a concept.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">ALSO this makes me ponder and remember.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">- This young girl couldn't have been more than 6 and already the "can't" stereotype had set in. I can't wait for a couple of more weeks until <a href="http://www.vaboard.org/ylf.htm" target="_blank">Youth Leadership Forum</a> ... a whole 5 days of telling them "You Can".</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">- Today I’m reminded of the reverse lie I told myself in tough situations when I was young. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">I told myself, “Ivy, you do belong." </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">I really did belong that's why I’m calling it reverse. Fake it until you make it. Shame on whatever people or situations that made me reassure / lie to myself.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">In the Facebook comments I said:</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I hope parents don't 'unteach' my example. lol! It's the adults you have to worry about you know.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">&</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">As I think back on this moment today, it was so awesome the staff person helped the convo along. She KNEW what I was up to. Major kudos to her.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Either I got there a minute too late or I wasn't listening until I heard CAN'T but I’m curious why the young girl said that in the first place? So cute! I’m very tickled by this little moment in time.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">.</span>Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com0tag:blogger.com,1999:blog-5018092052511335611.post-655432819267922222014-03-16T12:39:00.003-07:002014-06-11T18:59:28.137-07:00Rustin Cohle Quotes - HBO True Detective<span style="font-family: Arial, Helvetica, sans-serif;">Hats off to HBO, fine job!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The one-liners (or a few) in this show were fantastic. Not to say I subscribe to what was flying out of Rust’s mouth, but maybe I do in some strange way. It intrigued me enough to blog about it. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">By the third episode I knew I wanted to make a list of my favorite Rust quotes, here they are:</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">“It's thursday and it's past noon. Thursday is one of my days off. On Thursdays I start drinking at noon. You don't get to interrupt that.”</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">“I see a propensity for obesity. Poverty. A yen for fairy tales. Folks puttin' what few bucks they do have into a little wicker basket being passed around. I think it's safe to say nobody here's gonna be splitting the atom, Marty.”</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">“Certain linguistic anthropologists think that religion is a language virus that rewrites pathways in the brain. Dulls critical thinking.” </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Marty: Well, I don’t use ten dollar words as much as you, but for a guy who sees no point in existence, you sure fret about it an awful lot; and you still sound panicked. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">“At least I’m not racing to a red light.”</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">"People out here, it's like they don't even know the outside world exists. Might as well be living on the fucking Moon. It's all one ghetto, man. A giant gutter in outer space."</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">"I think human consciousness, is a tragic misstep in evolution. We became too self-aware, nature created an aspect of nature separate from itself, we are creatures that should not exist by natural law. We are things that labor under the illusion of having a self; an accretion of sensory, experience and feeling, programmed with total assurance that we are each somebody, when in fact everybody is nobody. Maybe the honorable thing for our species to do is deny our programming, stop reproducing, walk hand in hand into extinction, one last midnight - brothers and sisters opting out of a raw deal."</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">"If the only thing keeping a person decent is the expectation of divine reward then, brother, that person is a piece of shit. And I’d like to get as many of them out in the open as possible. ....</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">You gotta get together and tell yourself stories that violate every law of the universe just to get through the goddamn day? What’s that say about your reality?"</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">"The world needs bad men. We keep the other bad men from the door."</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">"Death created time to grow the things that it would kill."</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">“There is no such thing as forgiveness. People just have short memories."</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">“Been that way since one monkey looked at the sun and told the other monkey, 'He said for you to give me your fucking share.' People… so god damn frail they’d rather put a coin in the wishing well than buy dinner.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">….Yeah, well if the common good’s gotta make up fairy tales then it’s not good for anybody.”</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">“People incapable of guilt, usually do have a good time.”</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">“All your life, all your love, all your hate, all your memory, all your pain... is all the same dream: The dream about being a person.”</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">“Men, women... it's not supposed to work except to make kids.”</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">“Look, as sentient meat, however illusory our identities are, we craft those identities by making value judgements.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Everybody judges, all the time. Now, you got a problem with that, you’re living wrong.”</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">“Life’s barely long enough to get good at one thing. So be careful what you get good at.”</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">“This is a bar, not a fucking bedside. And being stupid’s not the same thing as catching sick.”</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">"Well, once there was only dark. If you ask me, the light's winning."</span><br />
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Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com4tag:blogger.com,1999:blog-5018092052511335611.post-90489457011570565042013-10-08T16:29:00.002-07:002021-06-08T13:29:26.129-07:00Vanguard Landing, a choice or same pattern of segregation in Virginia?<span face="Arial, Helvetica, sans-serif">I spoke a city council meeting 10.8.13</span><br />
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<span face="Arial, Helvetica, sans-serif">As a person with a disability and was once employed <a href="http://momsinmotion.net/" target="_blank">Moms in Motion</a>, a waiver facilitator that assist many
Virginians with disabilities live in their community, I'm confused and angry over the the expense and the intent the City has shown for Vanguard Landing.</span></div>
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<div style="margin-bottom: 0in;"><span face="Arial, Helvetica, sans-serif">While I realize people deserve home care options, I believe seclusion and segregation is never the answer. Those two factors are dangerous. If you were to look at the history of people with disabilities, you will find, again and again, a pattern of segregation and abuse. I'm not only referring to physical abuse but corruption of the internal care system that will surely happen in the future.</span></div>
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<span face="Arial, Helvetica, sans-serif">Why are we continuing to make the same
mistakes of the past? Why do the founders of Vanguard Landing think this is best option, when the US Department of Justice came into Virginia and said the (secluded) Training Centers had to be closed immediately? Isn't that a heads up that these type of places are dangerous?</span></div>
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<span face="Arial, Helvetica, sans-serif">The answer to caring for people with
disabilities can be found by studying Disability History.
</span></div>
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<span face="Arial, Helvetica, sans-serif">I invite everybody listening right now
to my Disability History presentation on October 21st at 6:30 in
Norfolk at <a href="http://www.hope-house.org/" target="_blank">Hope House</a> hosted by <a href="http://www.thearcofshr.org/" target="_blank">The Arc of South Hampton Roads</a>. If you study Disability History you will see segregation leads to abuse. Stop profiteering from caring of people with disabilities. There are current practices being used now to care for people with disabilities in their homes. It cost less to serve an individual in their home. Viruses such as COVID-19 kills at an increased rate in segregated settings such as Vanguard Landing.</span></div>
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<span face="Arial, Helvetica, sans-serif">I believe in small group homes
sprinkled throughout our community.</span></div>
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<span face="Arial, Helvetica, sans-serif">I believe in strengthening home care
support so anybody with a disability can live at home.</span></div>
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<span face="Arial, Helvetica, sans-serif">I believe everybody should live in
their community, near or with their loved ones.</span></div>
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<span face="Arial, Helvetica, sans-serif">Segregation is not the answer. It never
was and never will be.</span></div><div style="margin-bottom: 0in;"><span face="Arial, Helvetica, sans-serif"> </span></div><div style="margin-bottom: 0in;"><span face="Arial, Helvetica, sans-serif">Segregation is not the answer. It never was and never will be. Do not fund Vanguard Landing.<br /><br />Please look at the Facebook page that I and another advocate made:<br /><a href="https://www.facebook.com/advocatesagainstvanguard">https://www.facebook.com/advocatesagainstvanguard</a> </span><br />
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<span face="Arial, Helvetica, sans-serif"><br /></span><span face="Arial, Helvetica, sans-serif">A conversation on my <a href="https://www.facebook.com/ivy.kennedy/posts/10151634321150780" target="_blank">Facebook</a></span></div>
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<span face="Arial, Helvetica, sans-serif">__________________________</span><br />
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Released March 9, 2014<br />
New York Times Documentary: The Men of Atalissa<br />
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Produced by Kassie Bracken, John Woo and Dan Barry, "The Men of Atalissa" is the evocative, haunting story of a few dozen men with intellectual disability who lived in an old schoolhouse on top of a hill. For more than three decades, they were an integral part of an Iowa farming community, worshipping at the local churches, dancing at the local bars, working at a nearby turkey-processing plant; they were affectionately known as "the boys." But none of their neighbors knew of the day-to-day abuse the men endured in that schoolhouse on the hill.<br />
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The Iowa community had no idea of the abuse going on inside the bunkhouse.<br />
“I’ve been in the building back when it was nice.”<br />
“Never heard them complain.”<br />
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<a href="http://www.nytimes.com/video/us/100000002757071/the-men-of-atalissa.html" target="_blank">Video</a> | <a href="http://nyti.ms/1dCVuiK" target="_blank">Article</a> | A conversation on my <a href="https://www.facebook.com/ivy.kennedy/posts/10151925591385780" target="_blank">Facebook</a><br />
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Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com9tag:blogger.com,1999:blog-5018092052511335611.post-27968316931216481852013-06-04T13:07:00.001-07:002015-06-12T09:59:41.956-07:00To explain or not to explain: That is the question<br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">When talking to the public don't explain your disability at great length and then turn around and ask them to treat you like everybody else.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">It's a very contradicting message and I would love to see people with disabilities (and parents) stop using this way of introducing themselves.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Your disability is a part of you, but it does not define you. It's not the most important thing about you.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">If you start a conversation off with your medical diagnosis and rattle off how or why a disability effects you, I feel strangers will just compile the information into a large pile of CAN'T. You are building your own mountain that you will have to scale. People with disabilities have enough barriers, why create them with words?</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">A person is much more than their disability. Choosing how you communicate with the public that will convey that. Stop explaining yourself away. Stop self-identifying as a label. </span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">When meeting a person for the first time, find common ground with them. Friends heighten quality of life. Friendship can form under any shared interest. If the first thing out of your mouth is 'disability', however honest and clear you describe it it will create divide between you and the potential new friend.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Do you hear people say, "Hello. My name is Bob. I have high blood pressure."? No, you don't. Leave the medical labels in the doctors office. Even then doctors can be wrong, or medical diagnoses are always changing, or medical discoveries are made, so why bother trying to stuff yourself into a pre-labeled box?</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I used to tell anybody and everybody about disability, in hopes of if people understood then then they would accept. Explaining yourself into oblivion does no good. It takes and leaves you with nothing. It dehumanizes you. There is a time and place to explain your disability.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I do believe in teaching awareness in a careful all encompassing way. </span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">This disability month, that disability month…. It's starting to really get on my nerves. How much awareness does a person need to be beat over the head with? I'm sure by now, the bombardment of awareness has turned into a dull mind-numbing roar that the public has tuned out. </span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Instead of a particular disability awareness plug/PSA, advocate how people with disabilities should be treated. BUT then when doing that, you'll see the disabled community run into this paradox:</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">"Just like you." </span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">OR </span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">"Different. It's ok to be different." </span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">If it's confusing to me, our children must be baffled!</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I'm sure we all want to be accepted. We want a space at the family table, so to speak. In that aspect everybody on earth is the same. The truth is we each have our differences and as humans we are intelligent enough to include everybody.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">______________</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">"As we think so shall we speak, as we speak, so shall it be.”</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">People First Language is a way of speaking about people with disabilities in a positive manor that does not put disability in the spotlight. Too often the disability takes over conversations when the true focus should be on the person's likes, needs, wants and life goals. The way we choose to speak is so important, because it forms the world around us.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">People First Language also changes how we describe assistive devices.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">For example: She's in a wheelchair Changes to: She uses a wheelchair.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">People First Language may seem like a small thing, but if more people used it attitudes towards disabilities will change for the better. So be sure to try and use it and maybe just by listening, somebody near you will start using it too.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Here's a fabulous webpage that gives more detail about People First Language:</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><a href="http://www.gcdd.org/news-a-media/people-first-language.html" target="_blank">http://www.gcdd.org/news-a-media/people-first-language.html</a></span><br />
<br />
<br />
______________<br />
<br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">When reaching out for support or advocating for your child, at what point can it be damaging to social perception of disability?</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">A <a href="https://www.facebook.com/ivy.kennedy/posts/10152171797900780" target="_blank">Facebook chat</a> about two articles:</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Paying For My Special-Needs Child</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">&</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Why We Published A Photo Of A 16-Year-Old In A Diaper</span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">_____________</span><br />
<br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">“I stopped explaining myself when I realized people only understand from their level of perception.” </span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">_____________</span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">Stop blaming the disability. Take it off your list as the #1 go to reason when there is a problem. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><a href="https://www.facebook.com/ivy.kennedy/posts/10152814349495780" target="_blank">Facebook chat</a></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"> </span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">.</span>Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com2tag:blogger.com,1999:blog-5018092052511335611.post-60142323563244194612013-01-22T13:25:00.000-08:002013-02-13T20:03:55.405-08:00Coalition Rally and Advocacy Day in Richmond - 1.21.13<br />
<div style="margin-bottom: 0in;">
Coalition Rally and Advocacy Day</div>
<div style="margin-bottom: 0in;">
at the
</div>
<div style="margin-bottom: 0in;">
Bell Tower on Capitol Square in
Richmond</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
I have known about the Coalition Rally
and Advocacy Day for many years now, but this was the first time I
was able to attend thanks to <a href="http://www.thearcofshr.org/" target="_blank">The Arc of South Hampton Roads</a>. I was so
excited to be there amongst my peers in the disabled community!
</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
It was beautiful weather, which is rare
for Richmond in January. The sunlight lifted up our spirits even
further. Luckily there wasn't a harsh wind either. We were blessed to
have such a fine day, because the next day the temperature dropped.
</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
I arrived on a tour sized bus along
with my fellow local advocates, as we were pulling up the bell on the
Bell Tower was already ringing. For some reason that gave me a joyful
feeling for the day ahead.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
A small band was playing happy rallying
tunes to further pump the spirits of the crowd up. I couldn't wipe
the smile off my face when watching all different types of people
with disabilities dancing and laughing to the music.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
It was exhilarating to see so many long
time friends gathered in one place. It was also a wonderful
opportunity to make some new friends too! I'm a big believer in,
“It's not what you know, it's who you know.” So hopefully my
Social Network grew a little bit larger because of the rally
yesterday.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
There were so many fabulous speakers. Some delegates, people representing mental health services, advocacy organizations and self-advocates were there. I was honored to speak on behalf of VAULT. I'm a
board member of the first cross-disability advocacy group in the
state, <a href="http://www.virginiavault.org/" target="_blank">Virginia Advocates United Leading Together</a>. There were so
many voices that wanted to speak but there was not enough time. I'm
so glad that so many people wanted to speak out. So many strong
self-advocates is a sign of a bright future for all.</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
After the rally, the energetic crowd
headed up the hill to do what they traveled all that way for; to
advocate for themselves and loved ones, so the delegates knew for
sure to listen to our voice!</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
Highlights of the day:</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
Telling a legislator about a fact he
did not know:</div>
<div style="margin-bottom: 0in;">
People on medicaid can't get married.</div>
<div style="margin-bottom: 0in;">
The look on his face was interesting. I
knew my point dug in deep.<br />
(I mean they can, but they'll loose Medicaid)</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
Embarrassed by tracking mud into the
Senators and delegate's offices. Doing my spiel and when apologizing
for the mud and hearing all sweet like in a southern accent, "It's
alright, Don't you worry about it." I mean they have maids at
night, right? lol!</div>
<div style="margin-bottom: 0in;">
<br />
Being at the General Assembly for an outside rally that is mainly about mental health services THEN discovering gun rights advocates are there too, in the building. I doubt the two groups co-mingled. Sad. Missed opportunity.<br />
…Maybe?</div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
<br /></div>
<div style="margin-bottom: 0in;">
.</div>
Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com0tag:blogger.com,1999:blog-5018092052511335611.post-37947566275638858282013-01-04T14:16:00.003-08:002013-01-04T14:16:53.478-08:00State Budget Hearing - 1.4.13 - Medicaid Waiver
<br />
<div style="margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: medium;">Here's the speech I gave:</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: medium;"><br /></span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: medium;">It's a pleasure to be here
today. My name is Ivy. I've been using the Medicaid Consumer Directed
Waiver for over a decade to live in the community. Medicaid pays my
Personal Care Assistants. The Waiver assists me to give back to my
community by volunteering, going to school, and getting a job. I make
a positive difference in my community thanks to my PCA.</span></div>
<div style="margin-bottom: 0in;">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: medium;">For a true blue inclusive
community, to see people with disabilities living independently and
to see more of those individuals in the workplace, personal care
assistants need to be paid more and given quality health benefits.
This will secure PCAs as a serious career field and increase the
quality of care, which will eliminate a huge barrier to me and many
others.</span></div>
<div style="margin-bottom: 0in;">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: medium;">Please add 7,500 Waivers
slots to help the those on the wait list. People with disabilities
should not have to wait to have a Personal Care Assistant. PCAs are
essential to countless people with disabilities living in the
community. Families that want their loved ones at home, they need
support in the way of 400 ID Waivers and 200 DD Waivers. By
supporting this, you will be enabling Virginia to complying with the
Olmstead Decision of 1999, which states people with disabilities have
the right to live in their community.</span></div>
<div style="margin-bottom: 0in;">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: medium;">With the state wide
closure of institutions you must require budget transparency and use
the money saved by the closings to help families on the Waiver
waiting list. Restructure the Waiver to promote smaller group homes
which would allow for inclusive communities. Smaller group homes
would be also safer for people with disabilities, because a smaller
operation would squeeze out corruption, abuse and murder.</span></div>
<div style="margin-bottom: 0in;">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: medium;">This state is currently
ranked 45th in the country for its community-based residential
services for people with disabilities. I hope you
act now to make Virginia a state we all can be proud of. I urge you,
Virginia policy creators, to take this historic opportunity to reform
community-based services for people with disabilities! </span>
</div>
<div style="margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: medium;"><br /></span></div>
<div style="margin-bottom: 0in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: medium;">.</span></div>
Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com0tag:blogger.com,1999:blog-5018092052511335611.post-54330131160736519102012-12-10T17:31:00.000-08:002012-12-11T07:49:44.682-08:00Training Centers & Intermediate Care Facilities: How do we value people with disabilities?<br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Have you heard about the Department of Justice investigations into Virginia's institutions (aka Training Centers), and Intermediary Care Facilities (ICF)? Are you aware of the abuse and in some cases, even murder that goes on in these secluded places?</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">FACT: It's three times cheaper to care for a person with a disability in their home.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Currently Personal Care Aides (PCA) aren't paid more than burger flippers at McDonald's. They do not receive any type of benefits.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">However, the staff in state institutions and in some Intermediary Care Facilities earn three times more as home PCAs. </span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">These PCAs</span><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"> </span><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">should be seen and be treated as having serious career.</span><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"> They assist in executing the Olmstead Decision, which states people with disabilities have the right to live in the community.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Here's the crux of the problem: Money won't make people care like a mother. Nobody cares like your mother. </span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">But I do think an adequate paycheck and benefits would up the quality level of care. A higher pay grade would mean more hoops to jump through in school. It would weed out the people who really don't care.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">How do you teach people to care? You can't.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">_____</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I believe there's a direct link between the marginalization of people with disabilities and poor quality PCAs providing the care.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">If people with disabilities were valued more, money would allotted in the budget. The more money, the better quality of people providing the care.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">The money is there in the budget, trust me. </span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Expenditures involving people with disabilities are first to be cut in budgeting partly because they are seen as a non-contributing group that needs to be constantly taken care of. That is the current sad perception of people with disabilities. This perception can be changed. More people with disabilities could be employed if more businesses were opened minded. Employment coincides with inclusion in school too.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Due to the severity of disability of ICFs residents,</span><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"> part of what I just said doesn't apply of course.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Still, if community living were valued and if the standard practice of shipping your family member away to be cared for as the only/best option came to an end, ICFs and institutions may not even exist. </span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Full circle, if people with disabilities weren't marginalized as they are these ICF horror stories wouldn't be happening.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Truth be told, money and providing disability services do not mix. It's a perfect situation for corruption and abuse. So in reality this blog entry is all hot air. A lot of blogs are nothing but hot air, so just add this one to the pile. lol! :)</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Why can't we all just care for one another?</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">.</span>Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com2tag:blogger.com,1999:blog-5018092052511335611.post-25652599240805691942012-11-27T15:37:00.000-08:002014-01-16T16:50:06.486-08:00Prototype - Touch Screen Mouth Stick for iPad by iFaraday <br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I want to tell you about an awesome item iFaraday custom made for my mini iPad! It's a touch screen</span><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"> </span><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">mouth stick with an U shaped mouth piece. </span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I can find no other iPad mouth stick out there with an U shaped mouth piece. It is exclusive to iFaraday!</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I'm so glad iFaraday was able to work with me to create this product. They not only designed the U mouth piece but made the stick the length I needed! They also were able to angle the end of the stick so that it's similar to the mouth stick I use on my iMac.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">The best part about this new product is that it's affordable! I see a lot of these assistive technology iPad mouth sticks go for $50. This mouth stick was around $20! Half the price!</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Please help me spread the word about this new piece of assistive technology for people with disabilities, share this blog. Thanks!</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Go to iFaraday's Store <a href="http://www.ifaraday.com/" target="_blank">HERE</a></span><br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIXaPp8ooOX4St9aJ7ssZ8Sda_bQAVcjx6TLVh35EEoyq7mGpFlGMotgksP39Tvve8IsGn9H9Rwu9T_LDUgfzUxIKVFJYMznMZX_vVmcYpRaGuf4ebLSH0VGUbZfJxT6u9y-pIlJU7121o/s1600/IMG_0861a.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIXaPp8ooOX4St9aJ7ssZ8Sda_bQAVcjx6TLVh35EEoyq7mGpFlGMotgksP39Tvve8IsGn9H9Rwu9T_LDUgfzUxIKVFJYMznMZX_vVmcYpRaGuf4ebLSH0VGUbZfJxT6u9y-pIlJU7121o/s1600/IMG_0861a.jpg" height="217" width="640" /></a></div>
<br />Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com1tag:blogger.com,1999:blog-5018092052511335611.post-86144057685682451522012-11-08T09:04:00.001-08:002013-07-17T14:19:20.294-07:00People with Disabilities and the Republican Party – Election 2012<br />
<div style="margin-bottom: 0in;">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">If you were only looking at the
presidential debates in terms of people with disabilities, here's how
it added up:</span></div>
<div style="margin-bottom: 0in;">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Obama mentioned either people with
disabilities, or disability issues around four times. Each time he
did so, it was in a positive light.</span></div>
<div style="margin-bottom: 0in;">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div>
<div style="margin-bottom: 0in;">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Romney only mentioned 'the disabled'
once. (He couldn't even use <a href="http://www.gcdd.org/news-a-media/people-first-language.html" target="_blank">People First Language</a> as Obama did.) What
added to the offensiveness was when he said something like, “The
disabled will always be taken care of.”</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Fuck that! I don't want to be taken
care of, I want a job!</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">The party who preaches that the
government and tax payers shouldn't help people can can help
themselves, are such hypocrites and/or out of touch with people with
disabilities!</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I can help myself, I can be employed. In fact, I am employed with <a href="http://momsinmotion.net/" target="_blank">Moms in Motion</a>. A Medicaid Waiver Facilitator.</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I wouldn't be a so-called drain on
society if more focus was given to education and employment for all.
But inclusion of students with disabilities in school doesn't seem
very important to this country. It's all about seclusion so we can
provided services to 'help' them. Services that the Republicans
distain and want to cut. If there was more inclusion, many of these
services wouldn't be needed!</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">It's extremely offensive to me, a
person with a disability when I hear I “need to be taken care of”
and then to hear that I'm a “freeloader” that is dependent on the
tax payers that work hard for their paycheck!</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />I'll give you a need....</span></div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">The Republicans need to get with it on
so many issues. They are so out of touch with so many Americans.</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">P.S. People with disabilities are the largest minority group in the US.</span><br />
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<br />
<span style="font-family: Arial, Helvetica, sans-serif;">A report by Youth Transitions Collaborative</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><a href="http://www.hscfoundation.org/PowerinNumbersExecutiveSummary_508.pdf" target="_blank">Power in Numbers: A Profile of American Voters with Disabilities</a></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">July 12, 2013</span><br />
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Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com5tag:blogger.com,1999:blog-5018092052511335611.post-16691246465829355232012-06-24T13:25:00.003-07:002012-06-24T14:22:40.026-07:00Ms. Wheelchair Virginia --- March 16th - 17th 2012<br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Thank you to all the volunteers and Americorps, for without you this event could've not happened! Thank you!</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I'm so not the pageant type girl, but I told myself when I saw a opportunity for people with disabilities I MUST do it. I was hoping since I didn't have a college degree, that with <a href="http://www.vaboard.org/policymaking.htm" target="_blank">Partners in Policymaking </a>under my belt that would be a good time to try for Ms. Wheelchair Virginia. I also thought it would be a great way to meet new people. By the end of the weekend I realized my desire to socialize, might be the death of me. LOL!</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I'm so glad I have this as a life experience now, but I wouldn't do it again for anything! My mind loved being challenged but my Cerebral Palsy couldn't take the anxiety. It took me a good two weeks to unwind! For that reason alone I was relieved to not be crowned Ms. Wheelchair Virginia 2012.</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">The event was held at Woodrow Wilson Rehabilitation Center. I had been a CAD drafting student there 13 years before. To put it mildly, it was strange to be back on campus. I had many flashbacks. A few even stopped me in my tracks and alarmed my mother, “Ivy, what's wrong?” I found my anger towards the place had subsided a bit. After all I still had my friends and main squeeze in my life, all of which I had met at the center. My mother was hit by the same thought I had all those years ago, “Ivy, how did you stand this place?” We were only there two days and she saw IT. LOL!</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I'm not sure if I had a hard time eating because it was the same institutional slop I had to force down for two years, or if was my nerves. I couldn't believe I was betraying a promise to myself and eating that again. At least there was another contestant there to 'bellyache' with about the food. Angela also had gone to WWRC. We just could not believe we were eating that mess again. LOL! I cracked myself up by thinking during the big, final, celebration for the newly crown WMVA that these girls might not be eating to fit into their gorgeous dresses and here I was I JUST COULDN'T EAT! I also found it amusing shoes give women so much pain, I don't even walk and my shoes I wore that night gave me sores! Yet one thing we women have in common is we love our shoes, no mater the level of uncomfortableness. </span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">The time backstage with all the ladies was the best. I loved how that part was inclusive. All the Ms. So And So Counties where there to help the six of us. It was fun to sit back and watch those young ladies interact with the chaos that IS backstage. At one time two Little Misses were helping get things of the floor. They bent down at the same time and their tiaras clashed together. They just giggled. I thought it was the cutest thing. Even though we were glammed up too, it was a tad intimating to be surrounded by all that beauty. My thoughts, “This is so not my thing, I'm a surfer girl!” </span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I met some wonderful people. Jane, our coach awed my with her story of being stuck in an elevator during a blackout in NYC. What strength she has. I was impressed to hear she's slowly easing back into riding elevators. During our glam session before the stage event we ladies had a room with stations set up, hair, nails, wheelchair cleaning. It felt like that scene in The Wizard of Oz! My favorite part of the entire weekend was the facial station. It took me awhile to take in just how she got it done, but the woman giving us all facials was blind! It floored me! Of course she knew where exactly the tubes where laid out on the table, but I wanted to know how she wasn’t tripping over my chair? I noticed when she was doing the others, she was using her feet very carefully to mark to herself where our chairs where sitting. I let her knew how I impressed I was with her abilities. Last but not least I met Rose. Rose and Ivy. LOL! She had been Ms. Wheelchair Virginia 2008. She is an older woman with CP similar to mine. She seemed to be tickled with me and told me a few times that I remind of herself at that age. Rose is a talker like me. I instantly connected with her. I hope to visit her soon without all my nerves from that weekend. Oh and Angela, who lives 15 minutes from me but it took an event in Fishersville VA for us to become friends. Life is a trip!</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">There were PT/OT students there to help us from JMU. They were a welcomed bunch as far as I was concerned. They helped me into my dress. I wish they were able to come back with us to the hotel room. We sure could've used the help. My mom is amazing. She is there for me. The other contestants seemed to have lots of help there. It was just mom for me, and physically it was extremely difficult, which is another reason why I would not do Ms. Wheelchair Virginia again. Fundraising was easy-peasy for me, so everybody knew this event was coming up. I also sent out a facebook event camouflaging the event as an excuse to relax in the mountains for a couple days. Still nobody came out to support my mother and I. Brian would've came but they made it sound like they just wanted friends and family there for the event on stage and the dinner. </span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">My second favorite part of the weekend had nothing to do with Ms. Wheelchair Virginia. Terrible of me, I know. LOL! We visited my favorite record store, <a href="https://www.facebook.com/pages/Crossroads-Music-Movies/281008586749" target="_blank">Crossroads</a> and stocked up on yummy snacks at <a href="http://www.thecheeseshopva.com/" target="_blank">The Cheese Shop</a>. If you are near Fishersville, Waynesborro, Stuarts Draft, look those up! My mom wanted to go on to visit the cherry blossoms that were in bloom in DC but I threw a fit. Sorry mom! I was such in a bad state, physically after the event I needed to go home.</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I was thrilled and relieved Stephanie Copeland from Richmond VA was crowned Ms. Wheelchair Virginia 2012! She and I quickly became friends. Angela who was announced Ms. Congeniality of the group, continues to make me laugh and smile and I'm so glad to call her a friend. All of the ladies I shared the stage with are incredible and have tremendous strength. I love them all!</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Note: We had an interview with a panel of judges, create a life display board, answer two taylor-made questions from the judges on stage, and give a speech on stage.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Speech: Why the disabled community needs to bee more unified</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I'll paraphrase the questions because I don't remember. Who in the disabled community would you like to met? Judith Heumann Told a little about her leading a sit in in the 60's for disability rights. What's your favorite musical instrument? Electric Guitar. I makes feel blah blah can't remember, but I did squeeze in babbling about my favorite band. Hahaha! My favorite guitarist is Mike McCready from Pearl Jam!</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Facebook chat and well wishes: <a href="http://www.ivykennedy.com/blog/blogmwva.html" target="_blank">HERE</a></span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Professional photography done by The Highlander Studios: <a href="http://www.thehighlanderstudios.com/" target="_blank">WEBSITE</a></span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">A few Ms. Wheelchair Virginia 2012 Program Pictures: <a href="http://s5.photobucket.com/albums/y175/blondieblue227/MWVA12/" target="_blank">HERE</a></span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Ms. Wheelchair Virginia 2012 is Stephanie Copeland: <a href="http://www.princessonwheels.com/" target="_blank">WEBSITE</a></span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><a href="http://mswheelchairva.com/" target="_blank">mswheelchairva.com</a></span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><a href="http://americorps.gov/" target="_blank">americorps.gov</a></span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com1tag:blogger.com,1999:blog-5018092052511335611.post-27043667789512647612012-05-09T14:27:00.001-07:002013-06-16T15:54:22.012-07:00Nonexistent Grandfather Clause in the ADA<br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Please share this note, and share the knowledge. I'm sick of the lawsuits and inaccessibility because people want to argue about the so-called Grandfather Clause.</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">there are grants businesses can apply for towards accessibility at <a href="http://www.sba.gov/" target="_blank">sba.gov</a></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">"There is no Grandfather Clause in the ADA."</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">It looks like there is a lot of confusion about the distinction between the ADA's requirements related to new construction and alterations vs. requirements related to existing structures, and additional confusion about the distinctions between Title II (which covers state and local governments) and Title III (which covers many types of private businesses).</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Section 12183 is the section of the original Act that established requirements related to new construction and alterations under Title III. (Other sections establish similar requirements for state and local governments under Title II.)</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">The section of the law that establishes the obligation for public accommodations covered by Title III to address accessibility in existing facilities by removing barriers when it is readily achievable to do so is 12182 (not 12183), specifically 12182(b)(2)(A)(iv); it basically defines "discrimination" to include "a failure to remove architectural barriers, and communication barriers that are structural in nature, in existing facilities ... where such removal is readily achievable."</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">It should be noted that commercial facilities, which are also covered by Title III, are not subject to the "barrier removal" requirement, only to the requirements related to new construction and alterations. Commercial facilities are private businesses that are not open to the general public. They are generally places where people work but are not open to customers - places like warehouses and factories.</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">The obligation to ensure access to programs, services, and activities of state and local governments that are offered in existing facilities (commonly referred to as the "program access" obligation) works a little differently and is based on the concepts of the Rehabilitation Act of 1973 and its regulations.</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">You can find the ADA itself (the statute) online at http://www.ada.gov//pubs/adastatute08.htm, and the regulations for Titles II and III at http://www.ada.gov//regs2010/ADAregs2010.htm. I hope this is helpful. Please feel free to contact our office if you would like to speak to an information specialist. --</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"> Mid-Atlantic ADA Center</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">401 N. Washington Street Suite 450</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Rockville, Maryland 208501-800-949-4232 V/TTY301-217-0124 V/TTY</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">WEB: <a href="http://www.adainfo.org/" target="_blank">www.adainfo.org</a></span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">This information is intended as informal guidance and assistance and should not be considered legal advice or binding on any agency or entity. Please consult an attorney for legal advice.</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><u>In summary:</u></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">The only entities not subjected to ADA accessibility standards are Churches and commercial facilities such as factories and private businesses that are NOT open to the public. But commercial facilities are required to follow ADA standards in new construction and in remodeling.</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Tax Incentives for Businesses (ADA)</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><a href="http://www.ada.gov/taxincent.pdf" target="_blank">http://www.ada.gov/taxincent.pdf</a></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><a href="http://www.ada.gov/taxcred.htm" target="_blank">http://www.ada.gov/taxcred.htm</a></span><br />
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<a href="http://juliesmills.typepad.com/the_ada_titles_ii_and_iii/2013/04/misconception-series-1-my-old-building-does-not-need-to-comply.html" target="_blank">Series: Top 10 Misconceptions About Title II And III Of The ADA</a><br />
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Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com1tag:blogger.com,1999:blog-5018092052511335611.post-2017163507444169302012-04-10T11:42:00.001-07:002012-06-24T14:18:13.212-07:00My letter to Judge Gibney asking for court support of the DOJ agreement to close Virginia's institutionsI mailed this on 4.2.12 because 4.6.12 was the deadline for public comment to Judge Gibney. I wonder how many letters he got?<br />
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Please support the DOJ agreement - right to live in our community<br />
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Dear Honorable John A. Gibney Jr.,<br />
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I'm a person with a disability that has lived in the community all my life. I have friends. I do activities in the community. I went to public school along side my non-disabled peers. I feel institutions are holding me back even though I have never lived in one. (and in order from me ending up in one, I demand that all Virginia's institutions be closed) The Olmstead Decision says I have the right to live in the community. Living at home saves the government money, because institutions cost three times as much to care for one person. I'm appalled the institution in Chesapeake is still open. There are thirteen states with NO institutions for people with disabilities, I want Virginia to be next on that list. Make home support stronger so people can receive quality home care in their communities. <br />
Keeping institution staff employed and/or fear of weak home support is no reason to keep people with disabilities from their right to live in their community!<br />
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Regards,<br />
Ivy Kennedy<br />
Disability Rights Advocate<br />
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UPDATE: On 6.8.12 Judge Gibney ruled in favor of the DOJ agreement. I was there to hear the events in the courtroom! Read news articles and my opinion: <a href="https://www.facebook.com/ivy.kennedy/posts/310140219075930" target="_blank">HERE</a><br />
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.Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com1tag:blogger.com,1999:blog-5018092052511335611.post-16497943966085194332012-01-06T10:27:00.000-08:002012-01-08T10:33:48.891-08:00State Budget Hearing - 1.6.12 - Medicaid Waiver<span class="Apple-style-span" style="font-family:arial;">Video: <a href="http://youtu.be/nlAni5L1Upc" target="_blank">HERE</a><br /><br />It's a pleasure to be here today. My name is Ivy. I've been using the Medicaid Consumer Directed Waiver for over a decade to live in the community. Medicaid pays my personal care assistants. The waiver assists me to give back to my community by volunteering, going to school, and getting a job.<br /><br />It is three times cheaper to care for somebody in his or her home than in an institution. Virginia spends $250,000 per person annually to keep just one in an institution. If the state is really serious about closing institutions, and to see people with disabilities living independently and wants more of those individuals in the workplace, personal care assistants need to be paid more and given benefits. This will secure PCAs as a serious career field and increase the quality of care, which will eliminate a huge barrier to me and others.<br /><br />Virginia can save a considerable amount of money by complying the Olmstead Decision of 1999, which states people with disabilities have the right to live in their community rather than segregated institutionally. People with disabilities should not have to wait to have a Personal Care Assistant. Long waiver waiting lists that Virginia currently has could force people into institutions, which is the exact opposite of what the state is trying to do.<br /><br />The current budget allocates $262 million each year to fund the 5 state institutions. Virginia is one of only 10 states that haven’t closed a single institution. A big key to closing institutions is ending the waiting list for waivers so there can be care at home. As I said before waivers are three times cheaper, so what are you waiting for? The money could be used for issues talked about about today like education, mental health services and transportation.<br /><br />This state is ranked 48th in the country for its community-based residential services for people with disabilities. That is shameful. I hope you act now to make Virginia a state we all can be proud of.</span><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;">.</span></div>Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com0tag:blogger.com,1999:blog-5018092052511335611.post-10665531608969558972011-10-06T10:50:00.000-07:002011-10-18T16:30:09.044-07:00Virginia Employment First Summit - Virginia Beach October 4-5 2011<span class="Apple-style-span" style="font-family:arial;"><div>First I'd like to say, I'm grateful to have gone. The ARC gave me a scholarship. It was good to hang out with friends I don't see often and awesome stay in an ocean front room. As a self advocate I was urged to attend even though I was reluctant to go. Turns out my icky feelings were justified. </div><div><br /></div><div>The summit did not renew my faith in employment for people with disabilities. My same opinion was firmly held in place; All the agencies (the service system) finds jobs for people with disabilities. If all people with disabilities had jobs THEY wouldn't. So at the start it's flawed.</div><div><br /></div><div>I had been out of that loop for over ten years and it makes me furious to see 'they' are still spewing the same bullshit! Though there were good concepts sprinkled in here and there. Even my personal aide who knows nothing of that field pointed out twisted policies she overheard. I'm grateful I was able to give a bit of my opinion but just know I had to bite my tongue a lot!</div><div><br /></div><div>One example of a backwards policy they were talking about was the concept of paying a co-worker to help the person with a disability on the job.</div><div>Who wants a friend that's paid for?</div><div><br /></div><div>Not enough self-advocates were at the summit. The people who were there were on the same side of 'the game' patting themselves on the back, blowing hot air, and painting pictures of happy unicorns flying over rainbows. Who was missing? EMPLOYERS.</div><div><br /></div><div>Inclusion in the classroom and teaching awareness and rights (in school curriculum and at businesses) was mentioned a little but not enough, which DO effect employment so much I believe. No talk of changing people's perception of disability, which I think is the linch pin to everything. It also seemed backward to me, no talk of inclusion in school but then 'they' expect integrated employment to just happen? Good luck with that!</div><div><br /></div><div>Another thing that bothered me was somebody said, "Go find a person with a disability who wants to work and then go back to your network and find them work."</div><div>NO! Your network is not my network. Swamping is not going to work. Every person alive needs their own social network to draw from. If you're being PAID to refer people it takes the creditability out of it. Right?</div><div>Inclusion in the classroom will build social network. Segregating kids with disabilities has to end for many reasons, but simply for the reason of employment. In the real world for anybody many jobs are found by social networking.</div><div><br /></div><div>There was hardly no talk of college at the summit which made me mad but they talked about person centered planing and about setting goals early in middle school which will cover college for some students with disabilities. If person centered planning is done right it will bypass putting people with disabilities in convenient, over used job categories. These present categories are so limiting and demeaning. As some call these categories the three f's: filth, food and flowers. I realize some people with disabilities can only do these, but we all don't have to! Really if you're creative about it ANYBODY with a disability can do jobs way beyond the three f's. Rather in employment or education, the expectations need to be raised for people with disabilities.</div><div><br /></div><div>Tax dollars are paying for this, a twisted broken service system! The employment summit meant well but the people there are not thinking straight. I felt very out of place. Wait, am I the crazy person here or are they? I had that same feeling years ago when I was wrapped up in employment services. It is NOT a good feeling.</div><div><br /></div></span><span class="Apple-style-span" style="font-family: arial; "> </span><span class="Apple-style-span" style="font-family:arial;"><div>UPDATE 10.18.11: Kathie Snow author of Disability is Natural featured this (stay out of job services) on her 'Your stories' webpage <a href="http://www.disabilityisnatural.com/your-stories" target="_blank">Here</a></div></span><div><div><div><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;">.</span></div></div></div></div>Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com1tag:blogger.com,1999:blog-5018092052511335611.post-13200093599259709932011-10-03T11:29:00.000-07:002011-10-03T13:43:32.263-07:00Disability History and Awareness Month public comment to school board<span class="Apple-style-span" style="font-family:arial;">I spoke to my local school board on 9.20.11 Here's my speech.</span><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;">The biggest barrier facing people with disabilities is not something you can touch. Can you guess what it is?<br />It's people's attitude towards disability. I hope we can all agree that kids are more open minded than adults. Kids minds can be molded to have different perceptions very easily. Which is why I'm asking you to recognize October as Disability History and Awareness Month in schools. Awareness is important but I feel that you can't necessarily teach someone how to feel towards one another. Though by teaching about the history of a group it will lead to respect, compassion, understanding and breaking stereotypes about people with disabilities.<br /><br />By teaching this to the younger generation it would change the future of people with disabilities. The awareness would also improve the future of everyone in the community. When a person knows more and is more educated the community can't help but benefit from this knowledge. It would lead to including everybody in the community. No more leaving one out or shunning them due to the fear of the unknown.<br /><br />Virginia has a resolution designating the month of October as disability history and awareness month. There is a ton of curriculum published online for teaching disability history and awareness. I also have a lot of these links listed on my website <a href="http://www.ivykennedy.com" target="_blank">ivykennedy.com</a><br /><br />Teaching in schools as part of our history curriculum, the history of the disability rights movement and about the positive impact people with disabilities have had on technology and society, IS necessary. Teaching the history of other diverse groups in our school systems, has been proven to have a positive impact on the group and society as a whole.<br /><br />Even PBS is getting in on it. On October 27th they are airing a documentary about the Disability Rights Movement.<br /><br />Just think about it, nearly every group that has fought for their civil rights are mentioned in school textbooks. Why aren't people with disabilities? Please teach disability rights and history in all classrooms.</span></div><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;">Senate Resolution for Disability History and Awareness Month <a href="http://leg1.state.va.us/cgi-bin/legp504.exe?091+ful+SJ321ER" target="_blank">HERE</a></span></div><div><span class="Apple-style-span" style="font-family:arial;"><br /></span></div><div><span class="Apple-style-span" style="font-family:arial;">.</span></div>Ivy K.http://www.blogger.com/profile/18257769935596000914noreply@blogger.com0