January 19, 2024

VOR's Weekly News Update

VOR is a national non-profit organization

run by families of people with I/DD and autism

for families of people with I/DD and autism.

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Save The Dates!

May 6 - 8, 2024

Back to Capitol Hill!

May 6 - 8, we are assembling our members in Washington, D.C. to speak with congressional staffers, members of Congress, committee staff, federal agencies, and other stakeholders in the I/DD and autism communities.

We are still working on the details for where to stay, who to meet with, what to present / ask, etc.


Would you be willing to join us in D.C.?

With whom would you like to meet?

Would you prefer to stay home, and meet with your congressional offices via Zoom?

Please reach out to us at [email protected]

and let us know if you might be interested in attending

(no obligation)

If you would prefer to stay home and Zoom,

etc. etc. etc.

It's been five years since our last Washington Initiative, and we know that things have changed.

We need to know what our members want, and how many participants we might expect

so that we know how many rooms to reserve, how many meetings to set up, and what issues are of greatest concern to our members.

Please reach out to us at [email protected]

National News:

‘I’m Not Safe Here’: Schools Ignore Federal Rules on Restraint and Seclusion

By Fred Clasen-Kelly, KFF Health News, January 17, 2024  

Photos show blood splattered across a small bare-walled room in a North Carolina school where a second grader repeatedly punched himself in the face in the fall of 2019, according to the child’s mom.

His mother, Michelle Staten, said her son, who has autism and other conditions, reacted as many children with disabilities would when he was confined to the seclusion room at Buckhorn Creek Elementary.

“I still feel a lot of guilt about it as a parent,” said Staten, who sent the photos to the federal government in a 2022 complaint letter. “My child was traumatized.”

Documents show that restraint and seclusion were part of the special education plan the Wake County Public School System designed for Staten’s son. Starting when he was in kindergarten in 2017, Staten said, her son was repeatedly restrained or forced to stay alone in a seclusion room.

Federal law requires school districts like Wake County to tell the U.S. Department of Education every time they physically restrain or seclude a student.

But the district, one of the largest in the nation, with nearly 160,000 children and more than 190 schools, reported for nearly a decade, starting in 2011, that it had zero incidents of restraint or seclusion, according to federal data.

Staten said she was alarmed to learn about the district’s reporting practices, and in March 2022 she sent a complaint letter to the Department of Education’s Office for Civil Rights. When the district set up her son’s special education plan, she wrote, “they said things like ‘it’s for his safety and the safety of others.’”

Further, she wrote, in his district files, “nowhere in the record was there documentation of the restraints and seclusion.”

The practice is “used and is used at often very high rates in ways that are quite damaging to students,” said Catherine Lhamon, assistant secretary for the Office for Civil Rights.

The Department of Education says it is meeting with schools that underreport cases of restraint and seclusion, tactics used disproportionately on students with disabilities and children of color like Staten’s son.

For more than a decade, school nurses, pediatricians, lawmakers, and others have warned that restraint and seclusion can cause long-lasting trauma and escalate negative behaviors. In the worst cases, children have reportedly died or suffered serious injury.

“In an ideal world, it should be banned,” said Stacey Gahagan, an attorney and civil rights expert who has successfully represented families in seclusion and restraint cases. The tactics are “being used in ways that are inappropriate. I’m seeing parents with pictures of children with bruises and children afraid to go to school.”

No federal law prohibits restraint and seclusion, leaving a patchwork of practices across states and school districts with little oversight and accountability, according to parents and advocates for people with disabilities.

In 2019, the Government Accountability Office, which conducts research for Congress, said some school systems almost never tell the federal government about the use of restraint and seclusion. About 70% of U.S. school districts report zero incidents.

The Department of Education’s “quality control processes for data it collects from public school districts on incidents of restraint and seclusion are largely ineffective or do not exist,” a 2020 GAO report said.

Lhamon said her office is conducting investigations across the country and asking districts to correct inaccurate data. The Department of Education wants school districts to voluntarily comply with federal civil rights law protecting students with disabilities. If they don’t, officials can terminate federal financial assistance to districts or refer cases to the Department of Justice.


How Do Co-Occurring Conditions Affect Those With Autism? Government Panel Wants To Know

By Shaun Heasley, Disability Scoop, January 16, 2024

A federal panel charged with guiding the government’s autism efforts is looking for input on how other physical and mental health conditions impact those on the spectrum and the services they need.

The Interagency Autism Coordinating Committee, or IACC, is asking members of the public to weigh in on how so-called co-occurring conditions affect individuals with autism and the “research, services, and policy needs that may be helpful to consider in addressing issues related to these conditions.”

The panel comprised of government officials and members of the autism community is tasked with advising the secretary of health and human services and coordinating federal autism activities and it’s expected to use feedback collected to inform its recommendations.

Many people with autism experience physical conditions including gastrointestinal disorders, sleep disturbances, epilepsy, sensory and motor challenges, the panel said. Mental health issues can include depression, anxiety, aggressive or self-injurious behavior and suicidality, among others.

In addition, the IACC indicated that autism can present alongside learning disabilities, other intellectual and developmental disabilities and communication disabilities.

The panel wants to know about the most significant challenges that people with autism are facing as a result of co-occurring conditions and what research could be done to help address these issues.

What’s more, the IACC is asking for feedback on how autism services could be improved to better address co-occurring conditions in this population. That could include changes to make services more accessible, improve insurance coverage or alter interactions between individuals with autism and providers, among others, the committee said.

Members of the public have until Feb. 14 to submit comments to the IACC.

Read the full article here

Feds Move To Enforce Accessibility Standards For Medical Equipment

By Michelle Diament, Disability Scoop, January 17, 2024

Doctor’s offices often lack examination tables, weight scales and other diagnostic equipment that are accessible to people with disabilities. Now, the U.S. Department of Justice is trying to change that.

The agency is proposing a rule under the Americans with Disabilities Act that would adopt technical standards spelling out the responsibilities that hospitals and health care clinics operated by state or local governments have under the law.

The Justice Department said that the proposal published this month in the Federal Register comes in response to numerous complaints from people with disabilities who have been denied basic services by health care providers due to a lack of accessible equipment.

Complaints cited cases where doctors failed to obtain an accurate weight before administering anesthesia, a doctor who told a patient who remained in his wheelchair for the entirety of his annual exam that “I assume everything below the waist is fine,” and a patient who was afraid to go to the doctor after being placed on a standard exam table with no side rails.

“Individuals with disabilities often experience great difficulty obtaining routine or preventative medical care because of inaccessible medical diagnostic equipment. From examination tables to weight scales to mammography equipment, accessible (medical diagnostic equipment) is critical to ensuring equal access to medical care,” said Kristen Clarke, assistant attorney general of the Justice Department’s Civil Rights Division. “This groundbreaking rule marks a significant milestone in the Justice Department’s efforts to remove barriers that people with disabilities face when accessing medical care.”

The proposed rule would adopt accessibility standards established in 2017 by the U.S. Access Board for exam tables, chairs used for eye and dental exams, weight scales, mammography equipment and x-ray machines, among other items used by health care providers for diagnostic purposes.

The rule is being proposed under Title II of the ADA, which requires state and local government services, programs and activities to be accessible to people with disabilities, so the rule would apply to public hospitals, health clinics and other entities that state and local governments contract with to provide health care services.

Under the proposal, state and local government entities that provide health care would be barred from denying services to patients with disabilities because of a lack of accessible equipment and such providers would be prohibited from requiring people with disabilities to bring someone to help them with an exam.

The rule would require that any new medical diagnostic equipment that covered entities acquire be accessible until they meet a required threshold of accessible equipment. Providers that use exam tables would have to have at least one that is accessible within two years. Similarly, if the rule is finalized, entities that use weight scales would need to have an accessible one within two years.

The proposal is up for public comment through Feb. 12, 2024

Read the full article here

State News:

Montana - Commission OKs Initiatives to Help Disability Care Workers

By Christina Macintosh, Billings Gazette, January12, 2024

The statewide Behavioral Health System for Future Generations Commission has approved a recommendation to invest in credentialing care workers for people with intellectual and developmental disabilities. The approval is part of an an effort to address staffing shortages and high turnover in the field.

The 88% turnover rate for intellectual and developmental disability care workers in Montana is more than double the 43% average found in a study of 48 states.

Turnover is bad for outcomes for clients (imagine if your child got a new teacher each month) and is costly for providers. Each turnover costs providers between $2,700 and $5,200, because of the costs of training and onboarding.

Patrick Maddison, a commissioner who also runs an organization serving those with developmental disabilities, said his organization spent $280,000 on turnover last year.

If approved by the governor, the initiative would provide grants to five service providers across Montana, for each to credential 25 care workers through the National Alliance for Direct Support Professionals. The organizations will be provided with funding to cover the cost of having employees’ shifts covered while they’re being credentialed, and workers will receive one-time bonuses between $1,000 and $2,000 after completing credentialing.

It would also allocate funding for 500 spots in an online course in intellectual and developmental disability healthcare, open to licensed healthcare and behavioral health professionals, as well as college students.

Montana has a 29% vacancy rate for full-time intellectual and developmental disability care workers, compared to an average of 17% across the 48-state study. And 87% of the state’s intellectual and developmental disability programs stopped accepting new referrals due to staffing issues, compared to the study’s average of 52%.

Whether the most short-staffed providers will be able to make use of this initiative remains to be seen.

Rate increases for developmental disability services funded by Medicaid were increased last year for the first time in seven years, but wages remain low. The statewide average wage for a direct care worker in the developmental disability field is $14.80 per hour.

“Taco Bell is offering what our wages are,” Williamson said.

She said STEP is considering cutting holidays, vacation, or even health insurance — an area close to home for Williamson, who is currently undergoing treatment for cancer.

“Maybe if we cut these down, we can pay a dollar more an hour,” said Williamson, though she acknowledged that decreased benefits aren’t great for recruiting and retaining employees.

“It’s like a snake eating its tail,” she said.


Why Do We Support Sheltered Workshops?

Please watch this video from the Clelian Center Workshop

Illinois - Lawmakers, Advocates Protest Funding Cuts for Developmental Disabilities

By Jana Wiersema, News Gazette. January 19, 2024

State legislators are protesting a move by the Illinois Department of Human Services that is estimated to result in a nearly $90 million cut to funding for individuals with intellectual and developmental disabilities.

Members of the Illinois Senate Republican Caucus have signed a letter, penned by state Sen. Chapin Rose, R-Mahomet, to Gov. J.B. Pritzker in protest of the change.

According to the letter, IDHS’s Division of Developmental Disabilities plans to cut “2.5 million Direct Support Professional (DSP) service hours in group homes where approximately 10,000 adults with intellectual/developmental disabilities (I/DD) reside.”

The change reduces the total number of direct care hours available to individuals with developmental disabilities across the state by 9 percent, Rose told The News-Gazette.

“This reduction is an approximately $87.7 million cut to I/DD individuals and accounts for approximately 9% of total DSP funded hours and would result in a reduction of service hours for 90% of all group home residents,” he wrote. “This is extremely concerning to our caucus and is an issue that seriously affects persons with intellectual and developmental disabilities, their families, and service providers in our districts.”

Each person living in a Community Integrated Living Arrangement (CILA) has a rate sheet that describes their care and how many hours for care they’re allowed per day, week and year, explained Laura Anderson, a legislative liaison strategist with the statewide advocacy coalition They Deserve More.

She added that cutting 2.5 million hours means that 1,000 full-time employees statewide will not be hired or maintained.

“It’s really important that we not get caught up ... only in the numbers and the cost,” Anderson said. “This is about people in care and their circles of support. It takes a really special person to do this job.”


Elgin-Area Group that Provides Housing for People with Disabilities Pushing Back Against $87M in State Budget Cuts

By Gloria Casas, Elgin Courier-News Via the Chicago Tribune, January 16, 2024

The Illinois Department of Human Services’s proposed $87 million budget cut for services for people with developmental disabilities living in group homes could result in fewer residences being available, according to one nonprofit housing provider.

“We have tried to work (with the state) in good faith” said Lore Baker, president and CEO of the Association for Individual Development (AID), but the reductions they’re planning — based in some cases on data that’s 10 or more years old — are not reasonable or fair.

Among those who are going to be hurt are local residents, like Jim Gould’s son, David, 30, who lives in an Elgin group home.

“There are things a 2-year-old does that he can’t do. There are things he does that are age appropriate. His skills are all over the place, but he needs 24-hour care and supervision,” Gould said.

But based on the state’s new scoring system, the number of hours of care David receives is being reduced by 18% reduction, Gould said.

His son’s needs “haven’t changed,” he said. “Why should the number of hours of support he receives go down? It’s not like AID can say his hours have been cut so we’ll leave him alone for those hours. They still have to provide the same level of care, but they won’t get reimbursed.”

AID is fighting to stop the budget cuts proposed for Community Integrated Living Arrangements (CILAS), which are group homes to which professional support staff members are assigned to help people with varying levels of developmental disabilities.

Last year, the state revamped the CILAS calculator used to determine how many hours of assistance a support staffer provides to each person in a group home, Baker said.

“The formula was reworked and modernized,” Baker said. “When they ran those (new) calculations and sent out information to providers in the community who are supporting these folks, it cut millions of service hours out of the system totally.”

The hours reduction lopped $87 million from the state’s budget for the group homes at the same time the state added $72 million to cover increases dictated by the mandatory minimum wage increase that took effect Jan. 1.

“I’m not a mathematician, but that math doesn’t add up,” Baker said. “It feels like a shell game. You are putting in with one hand and taking out with the other hand.”


Pennsylvania - Opinion:

The State's Budget Reveals What the State Thinks of People with Disabilities and Autism   

By Marjie Stuber, The Pittsburgh Post-Gazette, January 18, 2024

A dire workforce crisis is hurting people with intellectual disability and autism and their families. The most immediate and effective way to resolve this crisis is for the Commonwealth to adequately fund the ID/A provider system so the direct support professionals (DSPs) who care for people with ID/A can make a living wage.

A’s budget is about to be announced. Are we going to step up for our vulnerable Pennsylvanians?

For decades, funding for DSP wages has been woefully inadequate. The ID/A system is a single payer system with the only funding coming from the state and federal matching dollars. For a decade or more though, funding has fallen dangerously low and, as a result, DSPs are difficult to hire and retain. In fact, many career DSPs have left the profession for work that provides a living wage.

s we anticipate the announcement of Governor Shapiro’s next budget on February 6th, we are anxiously waiting for his administration to address the crisis by including $430 million state dollars to increase the rates for services. The individuals and families who are directly affected are desperately waiting as well.

Anne Couldridge resides in Cumberland County and is the mother of an adult son with ID/A. She says, “For many decades, people like me have fought for the same opportunities for our children that other sons and daughters have. In my opinion, it’s a value statement that last year’s state budget doesn’t even scratch the surface of what people in the ID/A community need. That means our trauma has continued because it was clear that our family — my son — is simply not a priority.

“We need DSPs who are paid appropriately for the work they do so there will be enough DSPs to support people like my son. He deserves the quality of life that only his family and skilled DSPs can provide. To accomplish this, our legislators need to prioritize funding so the people who need the most support can access it.”

As we anticipate the announcement of Governor Shapiro’s next budget on February 6th, we are anxiously waiting for his administration to address the crisis by including $430 million state dollars to increase the rates for services. The individuals and families who are directly affected are desperately waiting as well.

Anne Couldridge resides in Cumberland County and is the mother of an adult son with ID/A. She says, “For many decades, people like me have fought for the same opportunities for our children that other sons and daughters have. In my opinion, it’s a value statement that last year’s state budget doesn’t even scratch the surface of what people in the ID/A community need. That means our trauma has continued because it was clear that our family — my son — is simply not a priority.

“We need DSPs who are paid appropriately for the work they do so there will be enough DSPs to support people like my son. He deserves the quality of life that only his family and skilled DSPs can provide. To accomplish this, our legislators need to prioritize funding so the people who need the most support can access it.”

“It’s not just about money,” say Rita Quashie-Smith and Brooke Urda, DSPs with Emmaus Community of Pittsburgh. “As DSPs, we are trained and educated as trauma-informed professionals. We know how to re-direct and provide specific care for our clients so they can work through these incidents and survive, literally.”

Yet, they say, “We do not get the support or pay we earn and deserve. We provide nursing assistance, we are often our clients’ only friends and family, and our work is physically and mentally demanding. These people just want to live in their homes and be part of their community. We must find a way to support DSPs so they can afford to do this job and help create a meaningful life for all Pennsylvanians.”

Read the full opinion piece here

Pennsylvania - New Law Aims to Make Guardianship Last Resort

By By Andela Couloumbis, The Standard-Journal, January 14, 2024

With little fanfare, Gov. Josh Shapiro in December signed into law a bill aimed at fixing long-standing problems within Pennsylvania’s vexing system for safeguarding adults — many of them seniors — whom courts deem incapable of making critical life, health, and financial decisions for themselves.

The bill, now Act 61 of 2023, makes changes to the process of assigning guardians to people who are considered incapacitated, whether due to age-related illnesses, mental health issues, or cognitive disabilities. Those guardians can be family members but are often professionals in the private sector who do such work for a living.

Families who have experienced the system have long complained it is rife with pitfalls: trapping people in guardianship for years, if not a lifetime, with little chance of escape. Spotlight PA last spring highlighted the story of one woman who alleges in a long-running civil case now before a top Pennsylvania court that her late mother’s guardianship (including her legal representation) was rife with conflicts of interest.

And some advocates believe that even the new law won’t solve the many problems associated with guardianship.

The new law, championed by state Sens. Lisa Baker (R., Luzerne) and Art Haywood (D., Montgomery) and signed by Shapiro in mid-December, is at its core an effort to make guardianship a choice of last resort. It requires judges and others involved in the process to first consider less restrictive alternatives, even when individuals are found to be incapacitated or unable to make many decisions for themselves.

In short, the law states, “the court may not use a determination of incapacity alone to justify a guardianship.” If a judge does decide on guardianship of a person, anyone can file a petition with the court to end or modify the oversight. And if there is evidence that a person’s incapacitation is temporary, or that circumstances may change, the court has to schedule a review hearing within a year.

The law also mandates legal representation for all people facing a court hearing to determine whether they are competent. And it would require professional guardians to pass a certification exam administered by a national guardianship certification organization.


Pennsylvania - Legislation would Restore Dental Coverage for Adults on Medicaid in PA  

By Kate Giammarise, WESA (NPR) January 16, 2024

Advocates and dentists are hopeful a state House bill will restore dental services for adults with Medicaid coverage in Pennsylvania.

The legislation passed the Democratic-controlled state House last month in a bipartisan 153-50 vote. Local sponsors include former state Rep. Sara Innamorato, Rep. Emily Kinkead, a Democrat, and Republican Rep. Valerie Gaydos.

“Dental care is absolutely essential,” said Gaydos.

Reinstating the coverage will be a benefit for both patients and dentists, said Helen Hawkey, executive director of the Pennsylvania Coalition for Oral Health, which has been advocating for the change for a number of years.

Coverage for many adult dental services was cut in 2011 under the administration of former Gov. Tom Corbett as part of a cost-saving move; the change was estimated to save about $18 million in state funds at the time. Since that time, adults in the state’s Medicaid program have had a very limited set of dental benefits that don’t cover much beyond routine exams, cleanings and basic fillings. 

“Oral health, I mean, it's part of overall health. If you have a dental problem and you don't take care of it, it can lead to medical problems,” said Dr. James Mancini, a local dentist who supports the legislation.

Combined with low reimbursement rates, cutting the benefits led to far fewer dentists accepting Medicaid, making it harder for patients to get care, said Dr. Mancini.

Dr. Matthew Weiss, whose practice in Bellevue accepts Medicaid, says he sees every day the need for more providers to accept Medical Assistance. He is hopeful the legislation will help.

“People have nowhere to go. And I see that firsthand because we are inundated with patients,” he said.

Weiss said the lack of full dental coverage leads to people often having their teeth pulled, rather than saved, which can impact a person’s quality of life.

“This is something certainly that should be a bipartisan effort,” Gaydos said. “It is a cost savings and it is taking care of people. It is a win-win.” She said she believes the change will ultimately save money in the long run through providing patients with better preventative care.

The bill is now in the state Senate, before the Human Services Committee. There is also a similar Senate bill, sponsored by Minority Leader Sen. Jay Costa, a Democrat.

“Pennsylvania is failing its most vulnerable residents,” Costa wrote in a memo to senators seeking co-sponsors. “Cuts made in 2011 to dental coverage under our state’s Medical Assistance program prevent many low-income Pennsylvanians from receiving the oral health care they need.”


Why They Are Rallying Virginia to Continue Funding State Developmental Disability Waivers

By Cameron Thompson, WTVR-6 News, January 17, 2024

Dozens of advocates braved the cold to rally at the state capitol Wednesday morning calling on lawmakers to ensure money stays in Virginia's budget that will help families with loved ones who have developmental disabilities.

"This is an opportunity to make the change now and shift the system from what it is now, which is reactive. And what should would we be? Proactive," Executive Director of The Arc of Virginia Tonya Milling said.

Milling and many other's message Wednesday was to address a backlog of what's known as Developmental Disability Waivers.

The waivers get people with developmental disabilities services they need -- with the most urgent being called priority one -- those who need those services within a year.

"It isn't a partisan issue. It's an entire community issue," said mother Bonnie Morales.

Currently, over 3,400 families are estimated to be on that priority one waitlist -- including Morales. She spent nearly eight years on the list for her daughter and has been on it for about a year with her son.

"It'll help get my son into his place to be independent, to be able to have the type of life experiences that somebody his age should be having and not just stuck at home," Morales said.

The rally was hosted by advocacy group, The Arc of Virginia. They're asking lawmakers to keep funding in Governor Glenn Youngkin's proposed two-year budget for over $300 million to clear that backlog.

"People are in desperate-needs families, we've had parents say to us over and over again, they're afraid to die," Milling said. "They're 85 years old, and there's no one to care for their child, their adult child with a disability."

Lawmakers from both parties and chambers appeared at the rally -- voicing their support for the funding, with some saying they're recommending even more money to increase the number of caregivers to provide those services.

"I've worked with these community members for a long time and we know that we do not have adequate capacity for the services that the individuals require," said State Senator Jennifer Boysko (D - Fairfax County (parts)), who said she submitted amendments for $250,000 for a feasibility study and over $5-million to increase service provider capacity.!


Florida - Nicklaus Children’s Hospital Opens Undiagnosed Disease Clinic

By Kristi Krueger and Kathleen Corso, Local 10 News, January 2024

Data from the national institutes of Health Rare Diseases Research shows that people with rare disorders can take years to properly diagnose, possibly losing precious time for treatment. Now there’s a special clinic focused on identifying and ultimately providing medical care for previously unknown conditions.

“Mark is laughter, joy, he just radiates happiness.” That is how Michelle Saka describes her middle child.

She didn’t know until he was a toddler that he had severe autism.

Although he’s non-verbal, Saka understands him perfectly.

“This kids disposition, he’s a ball of sunshine,” she said.

When Mark started exhibiting aggressive behavior, Saka enrolled him in a new ‘Undiagnosed Disease Clinic’ at Nicklaus Children’s Hospital.

“The demand is there and we are trying to meet the demand because although now these diseases are rare and not diagnosed, with the newer treatments coming up we can always diagnose and treat them,” said Dr. Parul Jayakar, Director of the Division of Genetics and Clinical Metabolism at Nicklaus.

Jayakar was instrumental in starting the clinic in April 2023.

“We have a team which includes a clinic coordinator, a genetic counselor, nutrition, social work, the palliative team and psychology,” she said.

And the clinic provides state of the art new testing for whole genome sequencing to help diagnose rare diseases.

“We can do rapid genome sequencing if we think the child is, you know, we need the diagnosis soon and we can’t wait for two months. We can also do what we call ‘long reads’ where we’ve done other testing and we don’t have an answer,” Jayakar said.

In Mark’s case, a mutation was found in a gene thought to be related to obsessive-compulsive and anxiety disorders.

“So when you take a test like this and you find a new gene that science didn’t know about 3 years ago, 5 years ago and you get ‘oh this is something, this could be something, this could be a mark’, now that’s very exciting. It’s the beginning of an answer, it’s the beginning of a pathway to try to navigate giving him the best life possible,” Saka said.

According to the National Institutes of Health there are more than 7,000 rare diseases and approximately 80 percent are estimated to have a genetic origin.

Read the full article here

VOR Bill Watch:

[Please click on blue link to view information about the bill]


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.


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.

S.1193 / H.R.2708 - The Latonya Reeves Freedom Act of 2023

Sen. Michael Bennett (D-CO) / Rep. Steve Cohen (D-TN) Allegedly written and strongly supported by ADAPt and other self-advocacy groups, this is a watered-down version of the Disability Integration Act. It is strongly biased against care in larger congregate facilities, and falls just short of seeking the elimination of ICFs.


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.

S.3118 - The HCBS Relief Act of 2023

Sen. Boby Casey (D-PA) A bill to provide for an emergency increase in Federal funding to State Medicaid programs for expenditures on home and community-based service. This bill, like others above, only provides funding for people receiving Long-Term Services and Supports through HCBS, denying any support for people in nursing homes or ICFs.

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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