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VOR's Weekly News Update
VOR is a national non-profit organization that advocates for
high quality care and human rights for all people with
intellectual and developmental disabilities.
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VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities | |
We are pleased to announce the publication of a new book by VOR's past President, Harris T. Capps:
"Parents and Guardians Essential Lexicon and Resouce Guide for Intellectual & Developmental Disabilities (I/DD) and Autism"
Harris' long-awaited book offers a wide range of guidance, resources, and a lexicon of terms frequently used by agencies and organizations that serve people with I/DD and autism.
While introductory in nature, the book offers even the most experienced parents and guardians a broad compendium of information, warmly mixed with personal insights developed over forty-six years of caring for his son Matthew, who was diagnosed with an intellectual disability from birth.
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As Harris states in his introduction, the intention of The Lexicon and Resource Guide is to "save readers time and stress, while forming a framework for understanding essential terms, organizations, websites, books, and other resources on I/DD and autism. My hope for a second publication would be one that provides a view into the I/DD culture, policy, roadblocks, and problem-solving approaches. Additionally, and update on this guide will almost certainly be needed as the covered topics change. In the meantime, I solicit any constructive ideas/feedback on improving any further editions."
Available on Amazon in Paperback and Kindle editions
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Senate Special Committee on Aging presents Olmstead Anniversary Panel (June 20, 2023)
The Senate Special Committee on Aging, presided over by Sen. Bob Casey (D-PA), presented an hour long panel on the 24th Anniversary of the Supreme Court decision in Olmstead v. L. C. The panel was moderated by Marlene Sallo, the Executive Director of the National Disability Rights Network (the organization that directs policy for Protection and Advocacy Agencies) and included Alison Barkoff (Acting Administrator and Assistant Secretary for Aging and Principal Deputy Administrator of the Administration for Community Living [ACL]), Ruby Moore (Executive of Georgia's P&A), Melissa Chang (a self-advocate who is currently a junior at Harvard), and Ricardo Thornton (a self-advocate who works at the Martin Luther King, Jr Memorial Library at the DOJ, and is a frequent presenter at these events). Senator Casey himself made a brief appearance,
As expected, the panel was extremely anti-institution, representing only one side of Olmstead and refusing to acknowledge those individuals with more severe disabilities and the need for higher levels of care than those available through Home- and Community-Based Services.
While VOR supports HCBS settings as appropriate to many individuals, we are aware of the cautions written into the Olmstead decision:
“For [some] individuals, no placement outside the institution may ever be appropriate...for these persons, institutional settings are needed and must remain available.”
“It would be unreasonable, it would be a tragic event, then, were the American with Disabilities Act of 1990 (ADA) to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”
It is indeed unreasonable and tragic that during these hearings, none of those who are paid by our tax dollars would represent the needs of ALL people with I/DD and autism and that no one spoke up for those who could not speak for themselves.
A video of this event is available here
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Feds Seek To Revamp Rules Related To Disability Housing
By Michelle Diament, Disability Scoop, June 20, 2023
For the first time in decades, federal officials are planning to update rules prohibiting disability discrimination in housing and they’re looking for input.
The U.S. Department of Housing and Urban Development is seeking public comment as it considers revising regulations related to Section 504 of the Rehabilitation Act of 1973.
Section 504 bars discrimination on the basis of disability in many circumstances including in any program receiving funding from the federal housing agency. But, HUD said that significant changes in the housing industry have occurred since rules were originally issued in 1988.
In addition, HUD noted that there is increased demand for housing in community-based settings in light of the 1999 Supreme Court ruling in Olmstead v. L.C., which found that states must provide people with disabilities the option to receive services in the community when appropriate.
“Inclusive communities and accessible, affordable housing are at the core of HUD’s mission,” said Demetria L. McCain, principal deputy assistant secretary for fair housing and equal opportunity at the agency. “Modern standards for accessible program design must reflect advances in building practices and technology. Hearing from the public, particularly stakeholders most directly impacted, is an integral part of HUD’s rulemaking process.”
In particular, HUD wants the public to weigh in on how the rules should “account for advances in accessible design, the use of websites and other technology and auxiliary aids and services, including assistive technologies” as well as whether to adopt an updated federal accessibility standard.
The agency said it’s likely to tweak its definition of “individual with disabilities” and it is asking stakeholders to comment on how a lack of affordable, accessible and integrated community-based housing is influencing individuals at risk of institutionalization and those trying to transition away from group homes and other facilities.
HUD is accepting public comment until July 24. After that, the agency plans to propose a new rule.
Read the full article here
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Medicaid Aims To Better Serve Adults With IDD, Aging Caregivers
By Michelle Diament, Disability Scoop, June 22, 2023
Upwards of a million U.S. households include an adult with intellectual and developmental disabilities who’s supported by an aging caregiver and that number is expected to grow. Now, Medicaid officials are making a push to better meet their needs.
The Centers for Medicare and Medicaid Services is issuing a collection of new resources to help state Medicaid and partner agencies as they design and deliver services for this burgeoning demographic.
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Across four documents, the agency is offering guidance on how states can anticipate the needs of adults with IDD and their caregivers as they get older and tips on devising policies and practices to support these needs and promote person-centered planning.
In addition, CMS is highlighting innovative strategies that states are already employing that could be replicated in other places.
Continued
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The Workforce Crisis
As we have stated frequently over the past months, the workforce crisis that affects ICFs and HCBS settings for people with I/DD and autism also affects the aging population. Our friends at NHCA/NCAL have shared a resource with us featuring an interactive map showing closures of facilities across the U.S. in recent years:
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Closures
The COVID-19 pandemic has spurred a labor and economic crisis in long term care. Workforce shortages, inflation, and a lack of government funding is making it hard for nursing homes and assisted living communities to keep their doors open.
Without government assistance, more facilities may have to close, threatening access to care for hundreds of thousands of vulnerable seniors and individuals with disabilities.
465 Nursing Homes have closed during the pandemic, and 18,071 residents have been displaced.
The article continues with more information and stories of the tragedies caused by these closures.
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Donald Triplett, the 1st Person Diagnosed with Autism, Dies at 89
By Keith Allen and Alaa Elassar, CNN, June 17, 2023
Donald Gray Triplett, the first person diagnosed with autism symptoms, died Thursday, according to his longtime employer. Triplett was 89.
Triplett started working at the Bank of Forest in 1958 and was remembered as a “fixture” at the small Mississippi city bank that sits about 40 miles east of Jackson.
“Every employee that has come through our doors since then, has fond stories and memories of him that we will treasure – looking enviously at his travel photos, having your picture taken by him as a new employee, a collection of trinkets & post cards given through the years, a nickname or number given when he met you, or even being shot by a rubber band,” the Bank of Forest said in a statement on Facebook.
“Don was a fixture at the bank for almost 65 years, and he will remain a fixture in our hearts for years to come.”
Triplett was identified as “Donald T.” in the 1943 paper “Autistic Disturbances of Affective Contact” by Leo Kanner of Johns Hopkins Hospital and the subject of a PBS documentary film as well as the book “In a Different Key: The Story of Autism.”
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The book, written by John Donvan and Caren Zucker, was a New York Times bestseller and a finalist for the Pulitzer Prize in 2017.
There is no definitive medical test to diagnose autism. Instead, the disorder is diagnosed by observing a child’s development.
Triplett was first examined by Kanner, a child psychiatrist, in 1938 and later becomes the first person diagnosed with autism symptoms.
Kanner’s paper elaborated on the idea that autism is related to a lack of parental warmth; this is later dubbed the “refrigerator mother” theory.
Read the full article here
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Moms Of Autistic Children Face Backlash After Saying That Autism Is Not A 'Blessing'
By Megan Quinn, Your Tango, June 21, 2023
One mother is fed up after being told by strangers that her child with autism is a “blessing” whenever she vents her frustrations, and she’s not the only one.
Many parents of children with disabilities have come forward encouraging people who are unaware of what the harsh reality consists of to stop telling them that their children’s struggles are a “blessing.”
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Recent years have seen a spike in the prevalence of children with autism spectrum disorder in the US. CDC data revealed that one out of every 36 children was diagnosed with autism in 2020. While having a child with autism has become more prevalent, some mothers are coming forward to explain why this does not make life any easier for them or their children.
One mother is shedding light on the incredibly challenging situation of parenting a child with autism, despite others, even some who have autism themselves, telling her that her child is a “blessing” and that her honesty about her struggles is harmful to her children.
“Your experience in life is nothing like my kid’s, so you don’t get to speak for him or say that calling autism ‘not a blessing’ is problematic,” says Jen Olney, whose son is severely autistic.
Olney claims that her son’s autism prevents him from keeping himself safe since he cannot understand basic concepts, including waiting until cars pass to cross the street and touching germ-infested surfaces.
While she acknowledges that everyone’s experience with autism is different and may be easier for others, it does not discredit those who have been significantly affected by it.
“If autism is a blessing for you, I’m so happy for you. That’s great,” Olney says. “You are not profoundly affected… you don’t know anything about the struggles that my son faces because of autism and the struggles that our entire family faces because of autism.”
Continued
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[Please click on blue link to view information about the bill]
VOR SUPPORTS:
S.1332 / H.R.2941 - Recognizing the Role of Direct Support Professionals Act
Sen Maggie Hassan (D-NH) / Rep. Brian Fitzpatrick (R-PA) This bill requires the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.
H.R. 553 - Workplace Choice and Flexibility for Individuals with Disabilities Act
Rep. Glenn Grothman (R-WI-6) - This bill would amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.
H.R.1296 - Restoration of Employment Choice for Adults with Disabilities Act Rep. Glenn Grothman (R-WI-6) - To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.
H.R.485 - Protecting Health Care for All Patients Act of 2023
Rep. Cathy McMorris Rodgers (R-WA-5) - This bill prohibits all federal health care programs, including the Federal Employees Health Benefits Program, and federally funded state health care programs (e.g., Medicaid) from using prices that are based on quality-adjusted life years (i.e., measures that discount the value of a life based on disability) to determine relevant thresholds for coverage, reimbursements, or incentive programs.
H.R.670 - Think Differently Database Act
Rep. Marcus Molinaro (R-NY-19) - This bill would amend title IV of the Public Health Service Act to direct the Secretary of Health and Human Services to establish a clearinghouse on intellectual disabilities, and for other purposes. Such clearinghouse shall include information on individual community-based services and long-term support services available to individuals eligible for medical assistance under a State plan under the Medicaid program under title XIX of the Social Security Act.
S.1298 - Supporting Our Direct Care Workforce and Family Caregivers Act
Sen. Time Kaine (D-VA) A bill to award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers.
H.R.2965 / S.1333 - Autism Family Caregivers Act of 2023
Rep. Grace Meng (D-NY) / Sen. Robert Menendez (D_NJ) To award grants for providing evidence-based caregiver skills training to family caregivers of children with autism spectrum disorder or other developmental disabilities
H.R.3380 - HEADs UP Act of 2023
Rep. Seth Moulton (D-MA) This bill authorizes the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary.
VOR OPPOSES:
S.533 / H.R.1263 Transformation to Competitive Employment Act
Sen. Bob Casey (D-PA) / Rep. Bobby Scott (D-VA 3) - This bill would support employers who wish to transform their facilities to provide only competitive integrated employment while forcing the elimination of programs that offer employment opportunities under Section 14(c) of the Fair Labor Standards Act. This bill would be unlikely to create a significant increase in employment for people with I/DD and autism, but would deprive over 120,000 individuals of the opportunity to work, develop skills, and be part of their community.
S. 1148 - The Guardianship Bill of Rights
Sen. Bob Casey (D-PA) - A bill to establish rights for people being considered for and in protective arrangements, including guardianships and conservatorships, or other arrangements, to provide decision supports. This bill would give ACL power to create a Guardianship Council and appropriate more money to P&As so they may encourage people to leave guardianships and move to Supported Decision Making. Dangerous over-reach in response to media hype on Britney Spears, et al.
VOR HAS SIGNIFICANT CONCERNS WITH:
S.100 / H.R.547- Better Care Better Jobs Act
Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) This bill establishes programs and provides funds for state Medicaid programs to improve home- and community-based services (HCBS), such as home health care, personal care, case management, and rehabilitative services.
The bill also makes permanent (1) the Money Follows the Person Rebalancing Demonstration Program (a grant program to help states increase the use of HCBS for long-term care and decrease the use of institutional care), and (2) certain provisions regarding Medicaid eligibility that protect against spousal impoverishment for recipients of HCBS.
S.762 / H.R.1493 - The HCBS Access Act
Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) While this bill purports to eliminate waiting lists and provide more Home and Community-Based Services for people with I/DD and autism, it favors the aspirations of those individuals who are most independent and neglects the very real needs of those most dependent on Medicaid Long-Term Services and Supports. It would not distribute funds appropriate to the varying needs of individuals, but to providers of HCBS programs. It fails to recognize the severity of the DSP and Nursing Crises, and paints an unrealistic picture of a simplistic solution. This is a purely political bill that would ultimately fail to make the extensive changes that the DD/A system needs.
VOR supports increasing funding for people with I/DD, but we have concerns that the above bills, in their current form, would discriminate against people with the most severe I/DD and autism and jeopardize the higher-care facilities that are most appropriate to their needs.
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Please share this offer with your loved one's
Direct Support Professionals!
VOR ❤️s OUR
DIRECT SUPPORT PROFESSIONALS!
Our loved ones' caregivers are essential to their health, safety, and happiness.
In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to receive our newsletter.
We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.
If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at
[email protected]
with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.
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What's Happening In Your Community?
Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?
Contact us at [email protected]
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Elk Grove Village, IL 60007
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