March 22, 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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March is Developmental Disabilities Awareness Month!



The Senate passed the Recognizing the Role of Direct Support Professionals Act (S.1332) earlier this week. The bill would give a standard occupational classification to Direct Support Professionals, an important first step toward getting them the recognition they deserve and improving their salaries and training. Maggie Hassan (D-NH) first introduced this bill in March of 2020, in the 116th Congress.

Now, we need the House to approve the companion bill, H.R.2941, sponsored by Brian Fitzpatrick (R-PA).

Please contact your Representatives in the House and encourage them to



H.R.2941 - The Recognizing the Role of Direct Support Professionals Act.

Click Here to find your Representative

VOR's 2024 Legislative Initiative

MAY 7 - 9, 2024

Registration Is Open!

Our 2024 Legislative Initiative will be held in Washington, D.C.

May 7 - 9

We plan to arrive on the afternoon of Monday, May 6th, and have an informal

get-together that evening. We will meet with congressional staffers from our state representatives on Tuesday, May 7th and Wednesday, May 8th. We also plan on meeting with staff on some of the congressional committees that are discussing the bills that affect our loved ones with I/DD and autism, and some of the federal agencies like DOJ, DOL, CMS, HHS, and ACL to remind them of our issues and our concerns with many of their activities. Additional meetings may be held on May 9 if necessary.

As always, we will provide our participants with contact lists for the congressional staff members for their state's D.C. offices. In the weeks before the initiative, we will hold meetings on Zoom to go over the materials we will be sharing with legislative offices and to help participants prepare for their meetings.

For information about how to register for the conference, please:


We ask that all participants in the 2024 Legislative Initiative are

current members of VOR.

Unable to attend this year?

You can still help us to advocate for your family.

Please Click Here To Sponsor the VOR 2024 D.C. Initiative

A Brief Report on the Report To Be Submitted by

The President's Committee for People With Intellectual Disabilities (PCPID)

The PCPID held an online presentation on March 21, 2024. The public was invited to watch the event, but not allowed to comment on the proceedings or policies put forth.

The meeting was a self-congratulatory celebration of Home and Community Based Services. No other services were mentioned. No people with more severe or profound I/DD or autism were even acknowledged. The committee's report to the President will ask for more funding for HCBS, more funding for competitive integrated employment, more services for the self-advocates on the committee, an elimination of the marriage penalty and an increase in the earnings ceiling before losing one's social security.

There was virtually no attention paid to the needs of high-acuity individuals, of those suffering on waiting lists, of those not receiving sufficient services, or of employment opportunities for those not accommodated by Competitive Integrated Employment programs.

The one exception to the rosy portrayal of the DD System was an excellent presentation by Joe Macbeth of the National Association of Direct Support Professionals, stating that the 'DSP Workforce Crisis' is not a crisis at all - It is a systemic failure. A crisis is a sudden change. and the PCPID reported on this situation twice - in 1996 and again in 2017. Unfortunately, Mr. Macbeth's report didn't dampen the cheery mood of the rest of the committee's review of its successes.

This is scary. The President's Committee for People with Intellectual Disabilities doesn't represent all people with intellectual disabilities when presenting a report to the President. A significant number of people, about 10% of those with I/DD, will not be given a voice. They have been ignored and marginalized by this committee, and they will be ignored and marginalized by President Biden when he reacts to the committee's report.

A recording of the committee proceedings will be available to the public in mid-April.


VOR's Quarterly Networking Meeting

March 25, 2024

5 pm Eastern, 4 pm Central, 3 pm Mountain, 1 pm Pacific

on Zoom

This month's topic:

"How can we better communicate and connect with others in-state"

We often rely on our ICF family groups to network with others who share our concerns, but what do we do when we need to connect other ICF groups, or folks with similar concerns who have loved ones in HCBS group homes or who receive services for their child who lives with them in their own home?

When an ICF closes, how do we keep the support and advocacy we once knew when families are separated and their loved ones live elsewhere across the state?

Not everyone wants to put up a Facebook page or start another in-state organization with monthly meetings. Not everyone can make it to legislative hearings in the state capital. Some of us simply want to create better networks for like-minded folks, without obligations.

Join with us on Monday, March 25th as we discuss ideas for how we can work to improve networking and in-state advocacy.

Registration for this is free, and is open to the public. You don't need to be a member of VOR to attend this meeting.

Please click here for more details and a link to the Zoom meeting.

National News:

MACPAC Report Takes Aim at Medicaid MCO Denials and Appeals

By Andrew Cass, Becker's Hospital Review, March 15, 2024

The monitoring and oversight in denials and appeals in Medicaid managed care was a core focus of the Medicaid and CHIP Payment and Access Commission's March 15 report to Congress. 

MACPAC outlines a series of recommendations to improve the beneficiary experience with the appeals process as well as boost states' monitoring and oversight of denials and appeals: 

Five things to know: 

1. MACPAC said Congress should amend the Social Security Act to require that states establish an independent, external medical review process that can be accessed at the beneficiary's convenience. The organization said this would improve trust in the appeals process. Beneficiaries currently appeal few denials. 

2. CMS should issue guidance to improve the clarity and content of denial notices. 

3. CMS should require Medicaid managed care organizations to provide beneficiaries with the option to receive denials notices electronically. 

4. Congress should require states to conduct routine clinical audits of MCO denials and use the findings to ensure access to medically necessary care. 

5. CMS should publicly post all state-managed care program annual reports to its website in a standard format to enable analysis. States should be required to include denials and appeals data on their quality rating system websites so beneficiaries can access this information when selecting a health plan. 

Read the full report here

Federal Proposal Could Have ‘Chilling Effect’ On Disability Research

By Michelle Diament, Disability Scoop, March 18, 2024

Much of what’s known about the experiences of people with autism and other developmental disabilities is based on Medicaid and Medicare data, but researchers are warning that a new proposal could sharply limit access to that information.

The Centers for Medicare & Medicaid Services wants to dramatically change the rules surrounding how researchers can tap what’s known as Research Identifiable File data while significantly hiking fees for such access.

Currently, researchers can pay to use CMS’s cloud-based system or, for a cheaper price, they can \

However, citing “growing data security concerns and an increase in data breaches across the healthcare ecosystem,” CMS is now looking to require all access to go through its cloud-based system. Only federal and state agencies would be eligible to request an exception to the new policy. At the same, the agency is planning to update its pricing.

Under the plan, researchers would pay an upfront cost starting at $20,000, plus an annual renewal fee of $10,000 and the costs would apply to each user. That’s a significant factor since many research projects involve teams.

The proposal is setting off alarm bells for researchers who rely on data from the agency. CMS subsequently extended the deadline for stakeholders to submit feedback until May 15.

“This would pretty much shut down my line of research that looks at Medicaid and Medicare,” said Eric Rubenstein, an assistant professor at the Boston University School of Public Health who has used CMS data to examine everything from autism prevalence in adults to heath care use among those with Down syndrome.

“Currently, I have a grant that (costs) me $250,000 in data costs. If a student wants to use the data for their dissertation, it is free. If I want to use the data for a different project it costs $2,000. I also have 12 staff and students working with the data on sub projects,” Rubenstein said. “Under the new proposal, we are looking at $40,000 per year in project costs, plus (about) $20,000 per year per user. So my first five-year project would be $2.5 million compared to current $250,000. And for every subsequent project I would need to pay the same cost.”

The CMS proposal would “dramatically increase the costs associated with doing this research."

Read the full article here

Latest House Republican Study Committee Budget Plan Again Includes Draconian Medicaid Cuts

By Edwin Park, Georgetown University, McCourt School of Public Policy, March 21, 2024

On March 20, 2024, the Republican Study Committee (RSC), whose members comprise more than three-quarters of the House Republican caucus, announced its fiscal year 2025 budget plan. The budget plan proposes to cut total federal Medicaid, Children’s Health Insurance Program (CHIP) and Affordable Care Act marketplace subsidy spending by nearly 54 percent over the next decade, relative to current law.

How would the RSC budget plan cut Medicaid?

  • Under the current federal-state financial partnership, the federal government pays a fixed percentage of states’ Medicaid costs, whatever those costs are. In contrast, under Medicaid block grants, federal funding would be capped, with states receiving only a fixed amount of federal Medicaid funding, irrespective of states’ actual costs. The RSC budget plan would convert Medicaid to five block grants for each of the following groups: children, seniors, people with disabilities, pregnant women, and all other beneficiaries (including parents).

  • The block grants would be annually adjusted only for population growth in the state for each of the five groups, even if actual Medicaid enrollment rises significantly faster due to a recession, a natural disaster or a public health emergency. There would be zero annual adjustment for annual health care cost growth, whether due to typical year-to-year health care inflation, a new drug or device or ongoing demographic changes (for example, if seniors’ average per-beneficiary health and long-term care needs sharply rise as the average age for seniors on Medicaid in a state significantly increases and seniors become more frail).

  • The RSC budget plan would cut the federal Medicaid matching rate (FMAP) to a uniform 50 percent for all states, beneficiaries, services and functions. Currently, states with lower relative average per-capita income receive higher regular FMAPs than states with the highest average per-capita income who receive the minimum FMAP of 50 percent. For example, in fiscal year 2025, Mississippi’s regular FMAP will equal 76.9 percent. This will also affect the territories; for example, in 2025, Puerto Rico’s FMAP will equal 76 percent and the other territories’ FMAP will equal 83 percent. Moreover, under the Affordable Care Act, the FMAP for the Medicaid expansion is 90 percent on a permanent basis and certain administrative functions, such as upgrades of state Medicaid claims and eligibility computer systems are eligible for a 90 percent FMAP. This means that the federal government will not only set a cap on overall federal Medicaid funding but require states to pay a much larger share of Medicaid costs below the cap.


Facility Spotlight:

Ohio - Ann Grady Services Providing Resources for Those with Intellectual Disabilities

By Amanda Fay, WTOL 11 -Toledo, March 18, 2024

Click here to view a YouTube Interview with Julia Hage of Ann Grady Services, founded in 1982, providing a wide range of services, including ICF, to the I/DD community

State News:

North Carolina’s Innovations Waiver is Lifesaving for 14k Disabled, but 17k Others Languish on Waitlist 

By Ray Hemachandra, The Carolina Journal, March 18, 2024

My son, Nicholas, is 23, intellectually disabled, and autistic. He has a good life. But most North Carolinians with significant intellectual and developmental disabilities lack the services and support he receives. 

In North Carolina, about 14,000 people — including my son — receive the Innovations Waiver. This Medicaid waiver is our state’s primary home- and community-based services (HCBS) support mechanism for people with significant intellectual and developmental disabilities, or IDD.

But several thousand more than that — 17,500 people with IDD — are on the waitlist for the Innovations Waiver, according to the state’s own Innovations dashboard. So, in North Carolina we have more people with significant IDD on a waitlist for Innovations Waiver services than receiving them.

Of those on the waitlist, roughly one third receive some partial services. Two thirds receive no support or services at all. The “wait” usually exceeds 13 years — and even that timeline depends on the state funding additional waiver slots, which is unpredictable and inconsistent.

There is no group of North Carolinians more vulnerable and at risk than those with significant IDD. But as a larger community and society, we rarely talk about them.

These precious intellectually and developmentally disabled North Carolinians are born in families of every socioeconomic class and every partisan political group — among Republicans, Democrats, third-party members, and independents. They are part of every demographic population, including every racial and ethnic grouping. They are white, black, Hispanic, Asian, Native American — every such identity designation. They live in every region, every city, and every town in North Carolina.

They are us.

When we fail these intellectually disabled human beings — and we are failing many, if not most of them, especially among the adult IDD population — they do not receive proper care. They are frequently in crisis. They become ill. They become homeless — making up a significant part of our homeless population. They are victims of sexual violence and sexual abuse at truly unfathomable rates. They become substance dependent. They die prematurely, and, perhaps even worse, live awful lives of desperation, marginalization, and genuine suffering. Often, all of these tragic outcomes occur not because of their disability but because of profound deficits of care, connection, and inclusion.

These are real people — real North Carolinians — living and dying in real lives.


Following up on last week's news:

Texas - How Unlicensed Group Care Homes Operate with Little Oversight: "I think the system failed my brother"

By Caroline Vandergriff, CBSD News Texas, March 18, 2024

As Arlington police continue to investigate allegations of abuse and neglect at several unlicensed group care homes in the city, they're talking to city leaders about the possibility of regulating these types of businesses.

Officers arrested Regla "Su" Becquer last month for endangering one of her clients and believe more charges could be filed against her.

Court documents paint a gruesome picture of what was allegedly going on at five unlicensed bed and board homes in Tarrant County operated by Becquer, from a disabled woman police found lying in her own filth to a resident claiming he was being poisoned.

"It's disturbing that people like this can get away with it for so long," said Chris Devendorf, whose brother, Steven Kelly Pankratz, was referred to one of Becquer's homes after a hospital stay for sepsis. "I don't understand."

Devendorf quickly became suspicious of the way Pankratz was being treated but wasn't able to pull him out of the board home.

Investigators say Pankratz is one of at least 13 people who died in homes operated by Becquer since Sept. 2022.

"I think the system failed my brother," Devendorf said. "I think the system failed a lot of people."

Devendorf was shocked to find out these board homes don't have to register with the state or meet any licensing requirements, as long as they have less than four residents.

"These are people who are preying upon some of the most vulnerable people in our society," said Dennis Borel, the executive director of the Coalition of Texans with Disabilities.

Borel says these unlicensed board homes are a problem across the state and often the only option for low-income people dealing with disabilities or illness, especially when it can take years to get into one of the state's licensed homes.

"We're not a poor state, and yet we've failed to provide a social safety net," Borel said. "That is a choice. Make no mistake about it. We can do better."

Borel says bad actors need to be put out of business.

"Cities can actually use their city ordinance-making authority to regulate these board homes, so that is one option," said Borel. "But on the state level, there's nothing."

State lawmakers did pass a few bills last session to address some of the concerns. Landlords and employees are now required to report abuse or neglect in these settings, and hospitals aren't supposed to discharge patients to unlicensed boarding homes unless the patient requests it.

Borel says that's just not enough.

"Really what needs to be done, is there should never be a type of unlicensed, unregulated type of residence like that," he said. "Let's get rid of them. But let's replace them with regulated, decent places to live."


New York Invests $32M in Workforce Development for Disabilities Support

Staff Report, Fingerlakes1 News, March 21, 2024

In a major move to strengthen the support for New Yorkers with developmental disabilities, Governor Kathy Hochul has announced a $32 million investment aimed at growing the workforce dedicated to this cause. The funding will boost the Direct Support Professional microcredential program managed by the State University of New York (SUNY) and the Office for People With Developmental Disabilities (OPWDD). This expansion is set to educate up to 6,000 students by 2030, significantly increasing the number of trained professionals in the state.

Governor Hochul highlighted the importance of direct support professionals, acknowledging their role in helping individuals with developmental disabilities lead fulfilling lives. The investment will facilitate the addition of new programs across more SUNY campuses, ensuring that more students have access to training in this vital career path. SUNY’s initiative has already seen remarkable participation, with 173 students joining the program at Dutchess Community College in the spring semester of 2024.

This initiative is not only about expanding educational opportunities; it’s also about enhancing the quality of life for New Yorkers with developmental disabilities. Through partnerships and federal funding from the American Rescue Plan Act, the program aims to create a more robust workforce by offering microcredentials that lead to national certifications and college credits. This comprehensive approach promises to bring about a significant change in the way support is provided to individuals with developmental disabilities across New York.


Read a press release from Governor Hochul here

Proposed Idaho Medicaid Budget Would Fund Some New Staff, Provider Pay Raises

By Kyle Pfannenstiel, Idaho Capital Sun, March 18, 2024d

Legislative budget writers have drafted the budget for Medicaid, Idaho’s largest state government program, that would keep the program’s budget at roughly $4.7 billion.

The Joint Finance-Appropriations Committee, Idaho’s powerful budget writing committee also known as JFAC, on Friday approved several new spending requests recommended by Idaho Gov. Brad Little. JFAC’s Medicaid budget for fiscal year 2025 includes funds for new staff that agency leaders said would help save money and increase pay for some medical providers that had been stagnant.

While Friday’s JFAC action fully funded provider rate increases, it only funded 75% of Little’s recommended $8.4 million to raise pay rates for residential providers licensed as Intermediate Care Facilities for Individuals with Intellectual Disabilities. 

“That is a service that has been steadily declining,” because of a lack of rate increases, Pisani told the Sun. She said the service serves people who have a developmental disability who may have medically complicated cases.

Read the full article here

Massachusetts - Family Faces Catch-22 from DDS in Trying to Get Residential Services for Their Daughter

By David kassel, The COFAR Blog, March 20, 2024

When Lara Dionne and her husband Martin attempted to bring their intellectually disabled daughter Keridwen from Maine to Massachusetts, they didn’t realize they would face a Catch-22-style series of bureaucratic rules and roadblocks from the Massachusetts Department of Developmental Services (DDS).

Keridwen has severe behavioral problems that require that she be placed in a secure setting, so the Dionnes requested a placement for her at the Hogan Regional Center in Massachusetts. She is currently living in an institutional facility in Maine.

However, DDS responded that it wouldn’t even consider whether Keridwen was eligible either for care at Hogan or for any other services until she was living in Massachusetts. DDS officials told the Dionnes they would have to bring Keridwen to Massachusetts in order for the eligibility determination process even to begin.

But, as we have reported, that eligibility determination process can take up to a year or more to complete. As a result, Keridwen would not have any services during that time, Lara said, and Keridwen and those around her would be at risk of harm due to her frequently violent behavior.

Yet, if the Dionnes were to leave Keridwen in the institution in Maine, the eligibility process for services for her in Massachusetts would never start.

“That scenario would effectively bar her (Keridwen) from ever moving to Massachusetts,” the Dionnes asserted in a statement filed with a DDS hearing officer who is considering their appeal to allow their daughter to be processed for eligibility in Massachusetts while she stays in the facility in Maine.

On top of all of this, as we have also reported, it is nearly impossible for adults with intellectual and developmental disabilities (I/DD), much less a 19-year-old such as Keridwen, to gain admission to either the Hogan Center or the Wrentham Developmental Center. That is because the doors to these two Intermediate Care Facilities (ICFs) have essentially been closed to individuals seeking admission.


California - Neighbor Sues 11-Year-Old With Autism Calling Him A ‘Nuisance’'

by Julia Marnin, McClatchy News via Disability Scoop, March 21, 2024

A single mother is fighting back in court against a former neighbor who filed a lawsuit over her 11-year-old son with autism, calling him a “nuisance.”

“I felt sick when I first read the entire lawsuit,” Serena Arvayo told McClatchy News.

Arvayo and her son Ezekiel, whom she calls Zeek, used to live with Arvayo’s parents in San Jose, Calif.

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After more than a year of living there, a next-door neighbor complained to Arvayo in May 2022 about sounds Zeek made while outside, according to Arvayo, who says her son is fully nonverbal and expresses himself through “vocal stimming, a form of vocalization.”

Arvayo explained to the neighbor that this is how her son communicates his emotions and can’t control it. Zeek has level three autism, a “severe form,” as well as ADHD, Arvayo says.

A few days later, the neighbor is accused of messaging Arvayo’s landlord, saying Zeek was playing “and making strange noises, and no adults (were) with him.”

“It is so disgusting,” she’s accused of adding.

Arvayo denies that Zeek was ever allowed unsupervised.

“It’s not his fault he cannot speak, and the sounds he makes are his only way of communicating, joy, pain, sadness, and the like,” she told McClatchy News.

Ultimately, Arvayo and Zeek moved out of her parents’ home in June 2022.

In December 2023, the neighbor, “Janine” Chun Lu, filed a lawsuit against her, Zeek, Arvayo’s father and the landlord.

Lu argues that the child’s behavior “constitutes a nuisance,” “continues to be indecent and offensive to the senses” and “has caused emotional distress,” according to her complaint.

She is demanding more than $25,000 in damages.

The lawsuit also accuses Arvayo and her father, Samuel Arvayo, of hosting “loud parties,” at the home. Serena Arvayo told McClatchy News the accusations against her family are false.

Mom sues the neighbor back

Now, Arvayo is suing Lu — accusing her of harassment, intrusion into private affairs, intentional infliction of emotional distress and abuse of the legal process, according to a cross-complaint filed by Arvayo on March 1.

She feels her son has been discriminated against, she told McClatchy News.


Iowa Family Describes Frustration of Finding Mental Healthcare for their Child

By Brian Tabick, KCRG News, March 21, 2024

“Our state has nothing to offer our boy,” said DaLayne Germundson of Mason City. “We need permission to look outside of Iowa.”

That was the reality facing one family trying to get mental health care for their son, and finding that the state of Iowa can only offer so much.

25,000 Iowans have a state waiver, opening taxpayer funding to pay for care related to a disability like mental illness or intellectual disability. Almost all of them get care within Iowa. But not all, and tens of thousands more, are waiting to get a waiver so they can access care.

“18 years ago, autism was out there but not like it is now,” said Germundson.

Autism is a part of DaLayne Germundson’s everyday life. His son Gabe was diagnosed at a young age. As he got older, he received another diagnosis: schizophrenia. The diagnosis has left him struggling to help his son, who is nonverbal.

“He would go in spurts where he wouldn’t sleep for two or three days,” he said. “He would have meltdowns where we’d have to physically hold him for hours at a time.”

Now, 20 years old, Gabe has undergone countless treatments, occupational therapies, and medications. A waiver opened up state funding for Germundson to pay for that care, but he said the options available have changed as Gabe has gotten older.

“It’s gotten progressively worse,” said Germundson.

Governor Terry Branstad closed the mental health facilities in Clarinda and Mount Pleasant in 2015. Five others have closed since then as the state pushes for less institutionalized care in favor of community options that offer more freedoms but are more expensive. The community-based homes he has lived in have supervision, but Gabe started getting hurt.

“The best care is not in a waiver house,” he said. He’s been in two of them that have been found for abuse.”

These supervised homes and other treatments for Iowans with mental illness or other disabilities that impair independence are not cheap. In fiscal year 2022, Iowa spent more than $768 million on waivers. $100 million more than the previous year. When we spoke to Germundson, Gabe was in the midst of a two-month stay at Mercy One North Iowa due to his psychosis; what Germundson thought was a last resort.

“This is the last place I want him is at Mercy,” he said. “But at least I know he’s safe. In just two days I have seen him decline dramatically.”

That was when Germundson said the state permitted him to start looking for placement outside of the state. While Gabe is an adult, there are currently 42 children Iowa is paying to get services in other states. 


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.7267 - Disability Community Act of 2023 To amend title XIX of the Social Security Act to provide a temporary higher Federal medical assistance percentage for Federal expenditures under the Medicaid program that are associated with the cost of compliance with certain Federal regulations with respect to services furnished in certain intermediate care facilities or home and community-based services furnished to individuals with intellectual and developmental 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.

S.7302 - The Credit for Caregiving Act of 2024 Sen. Michael Bennett (D-CO) This bill would amend the Internal Revenue Code of 1986 to provide a nonrefundable credit for working family caregivers. In the case of an eligible caregiver, there shall be allowed as a credit against the tax imposed by this chapter for the taxable year an amount equal to 30 percent of the qualified expenses paid by the taxpayer during the taxable year to the extent that such expenses exceed $2,000. The tax credit is not to exceed $5,000 per year.

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.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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836 South Arlington Heights Road #351
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