April 5, 2024

Gandhi under the magnolias, Union Square Park, NYC

VOR's Weekly News Update

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run by families of people with I/DD and autism

for families of people with I/DD and autism.

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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 Still Open!

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

National News:

Most Disability Programs See Flat Funding In Federal Budget

By Michelle Diament, Disability Scoop, April 1, 2024

A $1.2 trillion deal to fund the federal government includes more money for special education and disability employment, but many other programs benefiting people with disabilities were not as lucky.

The funding package signed by President Joe Biden late last month comes about halfway through the federal fiscal year after Congress spent months leaning on a series of stopgap measures to keep government programs operating. The measure funds the government through September.

Notably, the spending plan features $14.2 billion in funding for state grants under the Individuals with Disabilities Education Act, a $20 million increase over last year. And, vocational rehabilitation will see a $304 million boost, bringing the program to $4.25 billion.

At the same time, however, home and community-based supportive services, state developmental disabilities councils, protection and advocacy agencies and many other programs that people with disabilities rely on will see level funding, which disability advocates say is essentially a cut when inflation is factored.

The budget doesn’t take into account the realities facing people with developmental disabilities and their families, according to Kim Musheno, vice president of public policy at the Autism Society of America. She pointed out that the Administration for Community Living, which oversees many efforts to support people with disabilities across the lifespan, will see a decrease. And, funding remains flat for the Autism CARES Act and the Lifespan Respite Care Act, she said.


Note: As is so often the case, there is no mention here of DD services in intermediate care facilities, and no mention of the needs of those with severe/profound I/DD and autism.

White House Embraces Autism ‘Acceptance’ Over ‘Awareness’

By Michelle Diament, Disability Scoop, April 3, 2024

In a month that’s long been associated with autism awareness, the president is part of a growing shift toward emphasizing acceptance instead.

For the first time, President Joe Biden used a proclamation this week to designate “World Autism Acceptance Day,” which was held on Tuesday. In previous years, the date had been dubbed “World Autism Awareness Day.”

“I call upon all Americans to learn more about autism to improve early diagnosis, to learn more about the experiences of autistic people from autistic people, and to build more welcoming and inclusive communities to support people with autism,” Biden wrote in the proclamation touting government efforts to address the needs of people with autism through education, employment and other means.

The language shift comes at the urging of autism advocates, according to Kim Musheno, vice president of public policy at the Autism Society of America.

“We made the switch in 2021. I tried to get the president to switch in the proclamation for the past two years without success until this year,” Musheno said.

The movement toward autism “acceptance” first emerged as a grassroots effort in 2011 spearheaded by Paula Durbin-Westby, a self-advocate who created a Facebook event titled “Autism Acceptance Day.” At the time, she said she was inspired to act after hearing from others on the spectrum who were frustrated like she was by awareness activities focused on soliciting donations.

The Autistic Self Advocacy Network signed on to the new terminology in 2013 and other groups including TASH, the National Council on Independent Living, Easter Seals and the National Association of Councils on Developmental Disabilities have supported “acceptance” efforts in April at various times since then.

“While of course we want people to know about autism, the term ‘awareness’ can have negative connotations, implying that the thing we should be aware of is something to be scared of or panic about,” said Zoe Gross, director of advocacy at the Autistic Self Advocacy Network. “By contrast, autism acceptance is about creating a society that accommodates and includes autistic people in all aspects of life.”


Note: While self-advocates seek acceptance of autism, their campaign further marginalizes those with severe autism. Parents of individuals with severe or profound autism are unable to accept and celebrate their family member's autism. They are too busy caring for them. There is no acceptance.

This movement again illustrates the biases that pervade our DD system.

Sheltered Workshops:

Missouri's Sheltered Workshops Elevate Employees With Disabilities, With A Day At The Capitol

Lake Expo, April 2, 2024

Over 60 representatives—managers, staff, parents, and employees—from 30 Missouri workshops gathered earlier this year at the Capitol, for Missouri Association of Sheltered Workshop Managers’ Goods and Services Day.

The annual event, held this year on Jan. 24, is a chance for workshop supporters to show state leaders the dramatic range of workshop products and services – and talk about what workshops do that is often unseen outside of workshops.

Several shops brought jigs and other adaptive devices custom made to help employees with disabilities in ways that private businesses rarely attempt. Others showcased the array of products and services that workshops deliver to both local businesses and large corporations.

Legislators were impressed, with several noting they didn’t realize the extent of workshops' involvement in Missouri’s economy or the many efforts to provide employment choice for Missourians with disabilities.

“It’s a great opportunity for Missouri’s leaders to see what workshops do on many levels,” MASWM President Rob Libera said.

“It is impressive to see how many services the workshops across the state offer! Our legislators are always amazed by the abilities of our nearly 5,000 employees statewide,” states Natalie Couch, Executive Director of Lake Area Industries. In Camden County, Lake Area Industries serves 55 individuals by offering services such as packaging and assembly, secure document destruction, cardboard and dock foam recycling, mobile work crews, and even operates their highly popular garden center, Gifted Gardens.

For more information on Missouri workshops, visit moworkshops.org. and for more information on your local workshop, Lake Area Industries, visit lakeareaindustries.org.

Read the press release here

"Show Me The Money"

Paying for Essential Services:

Op-Ed | Don’t Leave Our Most Vulnerable New Yorkers Behind in Budget Negotiations.

We Need a COLA Without Contingencies!

By Assembly Member Rebecca Seawright, Chair of the Assembly People with Disabilities Committee, AM New York, March 29, 2024

Direct Support Professionals and non-profit provider agencies are the backbone of our state’s care service sector with over 85% of the responsibility for supporting people with intellectual and developmental disabilities. The forecast is bleak with no relief in sight with the hemorrhaging of staff costing providers $100.5M annually. We must fund a comprehensive 3.2% Cost of Living Adjustment in our final State Budget without contingencies. The system serving I/DD New Yorkers simply cannot serve the demands of a fragile population in the face of an annual 30% workforce turnover, and agency vacancies in excess of 17%.  

As negotiations are underway and the Budget’s April 1 deadline has been extended, we continue the fight against the contingency language in the current proposal for the COLA. Essential costs like energy, insurance, transportation, maintenance, food and technology to name a few would be excluded from the increase. From 2022 to 2023, salary and benefit costs alone grew by 14%, and workers compensation by a staggering 66%.  

Provider agencies are not immune to inflationary forces that are pushing a vital sector into a deleterious state. Cost increases related to mandated fringe benefits, repairs and maintenance, utilities, food, supplies, transportation, and insurance over the past year has resulted in untenable and constricting financial pressure on agencies. Additionally, since the I/DD provider agencies are solely funded by Medicaid, agencies are unable to increase reimbursement for services to compensate for increased costs of operations.

Historically, we have championed a strong COLA in years past to both improve the recruitment and retention of our workforce, as well as to provide for the inflationary increases in operating costs. Meeting operational costs is fundamental to keeping programs open. If providers cannot meet the soaring costs, they will close their doors cutting off services to over 130,000 New Yorkers with disabilities. Flexibility in the COLA is necessary to increase salaries for hardworking DSPs and to fulfill commitments to fringe benefits, care management staff travel costs, and worker’s compensation.  

We have an obligation to workers who are also not immune to inflationary pressures and are being pushed further into poverty. A recent survey by the New York Disability Advocates (NYDA) found that while DSPs are working to support I/DD New Yorkers, they can’t sustain themselves with nearly half of all DSPs reporting that they have limited access to sufficient food and shelter. It is reprehensible that the low pay and understaffing causes DSPs to take on multiple jobs and work long and demanding hours, causing distress and burnout. Women of color dominate this field and suffer the most from the inequities of a deteriorating system. 


Connecticut - ‘It’s a Travesty.’ Hundreds in CT with Intellectual Disabilities on Waitlist; No Group Home Space

By Ed Stannard, Hartford Courant, April 1, 2024

Zoe Benjamin has extremely serious intellectual disabilities.

“My husband and I took care of her until three years ago when he died,” said her mother, Adrian Benjamin. “She’s nonverbal. She needs help with all aspects of personal hygiene. She’s very physically active. She runs around like a crazy girl, but she has no safety awareness. So she would run in the street, touch the hot stove. Can’t be safe alone in the bathroom, in the bathtub or anything.”

Zoe Benjamin is 27. Adrian Benjamin and Zoe’s father, Steven Horowitz, took care of her until Horowitz died three years ago. Then, Zoe Benjamin was able to get into a group home in Wethersfield run by Harc of Hartford, one of the social service agencies that receives money from the state Department of Developmental Services.

“We were suddenly designated to be an emergency after my husband died. He had cancer,” said Adrian Benjamin, who lives in New Britain. “And so she got an emergency group home placement.”

The Benjamins were fortunate. The waitlist for placement in group homes stood at 710 at the end of fiscal 2023, according to Gov. Ned Lamont’s office. That number is a significant reduction from the 934 the previous year.

The number of families waiting for placements had been growing since 2019, when the waitlist stood at 759. The most recent high was 1,015 in 2017.

Low pay keeps beds empty

The CEOs of Harc and other agencies say a major problem in getting more people like Zoe Benjamin into group homes is the low pay for their staff, which stands at $17.25 an hour.

“I have four group homes that today are sitting vacant,” said Barry Simon, CEO of Oak Hill in Hartford, who has led such agencies for 32 years.

“I could be creating jobs and taking people off the waitlist if the state wanted to pay reasonable wages. But they don’t,” he said.

“To find employees for 17 bucks an hour, who are wanting and willing to do personal hygiene for people, change adult diapers, give people showers and bathing and do the food prep and understand the medical needs and the medications that are needed. These are tough jobs. They’re skilled jobs and people have to be dedicated to doing that.”

‘A very sad waiting list’

Zoe Benjamin was evaluated as a seven on the eight-point level-of-needs scale used by DDS to determine where someone falls on three waitlists: emergency, urgent and planning, Adrian Benjamin said. She said there are more than 100 people on the emergency list.

“The law mandates school for people with disabilities till they’re 21,” she said. “But there’s no mandate after someone turns 21 for any services at all. So that’s why there’s a huge waiting list, a very sad waiting list for people. I mean, if my husband hadn’t died, we’d still be waiting, even though I’m 71. So once you’re in a true emergency situation, like a desperate emergency situation, then you can get services.”

‘Dealing with human lives’

Tamara and Andrew Selinger have two children with fragile X syndrome and autism: Brian, 30, and Jodi, 33. Brian is in a group home run by the Jewish Association for Community Living of Bloomfield, but Jodi is not, and Andrew Selinger is no longer able to provide as much care since he had a heart attack three years ago.

Both of the Selingers’ children also are listed as seven of eight on the level-of-need scale. 

“The care needed for our daughter is supervision 100%, for safety,” Andrew Selinger said. “She does not have safety awareness in the case that if there was an emergency, a fire, she would not know how to respond. She would freeze. She would not be able to communicate well. … She needs help with basically all of her daily living activities.

“After I had a heart attack and realized that I have some issues, we asked to be put on the urgent list,” he said. “That’s been three years since then. So it’s very concerning that there’s a moratorium on group homes when the need exists. The other issue, it’s not just the residential placement. It’s basically the funding for the providers for the people, our lifeline.

“We’re dealing with human lives. We’re dealing with people that will have trauma as a result of these decisions. And that’s what it’s all about to families.”

‘Human guardrails’

While the personal care aides in group homes make $17.25 an hour, compared with the state’s $15.69 minimum wage, and Lamont’s fiscal 2025 budget keeps their pay at that level, the governor recently negotiated a contract with the state’s largest health care union that will bring home health aides’ pay to $23 an hour in fiscal 2026.

The contract with New England Health Care Employees Union, SEIU 1199NE, brings a 26% increase over three years, as well as longevity bonuses, expanded paid time off and reduced health insurance costs. 

“They are independent contractors doing the same work in people’s homes,” Simon said. “They take care of people with intellectual developmental disabilities, they take care of people who are aging, they take care of people who are medically fragile, but they do it as independent contractors.”

Adrian Benjamin said the aides in the group homes should be paid equally to the home health aides, but the governor’s frequently cited “fiscal guardrails” — mostly spending and borrowing caps — are hurting those in need of services.

“I consider the staff who take care of my daughter human guardrails,” she said. “They’re the ones that keep her from touching something hot on the stove. They’re the ones that keep her from walking outside and into the street. … So the state depends on the human guardrails to take care of people with disabilities, the homeless. There’s a lot of unmet needs.”


West Virginia Grapples With IDD Waiver Program

By Emily Rice, WV Public Broadcasting, APril 3, 2024

The IDD Waiver Program

By connecting people with disabilities with resources like home health care workers and financial support, the Intellectual and Developmental Disabilities (IDD) Waiver program allows people with disabilities to live outside hospitals and institutions.

Department of Human Services (DHS) Secretary Christina Mullins testified before the Joint Standing Committee on Health and Human Resources on Dec. 12, 2023 about the status of the IDD program. 

Alongside her, Robert Hansen, special assistant for IDD at DHS, also testified about the program, stating West Virginia has approximately 33,000 individuals in the state who have a mental, intellectual or developmental disability.

“Six thousand of these individuals are currently being served by the IDD waiver program,” Hansen said. “And then we also have 530 individuals who are on the waitlist to enter that program. And today we have approximately 73 individuals who are IDD who are in our two state hospitals.”

Hansen also told the joint committee that workforce shortages place a burden on the IDD system.

“There’s also a lack of specialists that can work effectively with people with IDD, and that includes individuals that are trained in positive behavior support, and then people who are trained in applied behavior analysis,” Hansen said. “These are individuals that can work with patients, clients who are identifying and having serious issues and could be a support and for the direct service staff and helping to develop active treatment plans to address the behavioral issues that may be becoming more and more of a concern.”

Mullins testified that not only are workforce shortages the biggest challenge DHS faces but that those workers need development training. “We’d like to increase the availability of training for all levels of staff,” Mullins said. “This training should include coaching and mentoring to ensure that select placement can be achieved. It’s not enough just to train, we have to also mentor.”

During the last 10 months, Mullins and Hansen have provided sworn testimony to various committees of the legislature that depict a crisis among the workforce of the IDD program largely due to low wages that cause operating losses at the state psychiatric hospitals.

Budget Cuts

In the final hours of the 2024 regular state legislative session, West Virginia lawmakers passed a budget that cut funding for IDD waivers.

In 2023, the IDD Waiver budget line item was $108,541,736. In this year’s budget, the IDD Waiver program was allotted $97,687,562 — a decrease of more than $10.8 million.

Senate Finance Chairman Eric Tarr amended the cuts into the budget on the last day of the session. He said the decrease in funds for individuals with disabilities was an effort to increase transparency on the state health department’s spending following last year’s split of the Department of Health and Human Resources into three departments.

In a statement published on March 12, Tarr explained that his committee broke down much, but not all of Human Services in subsections and restricted the ability to transfer funds outside of those subsections.

“Ultimately, we increased the aggregate level of appropriation to Health, Human Services, and Health Facilities (what would have been DHHR) by about $9 million this year,” Tarr wrote. “However, this included a $100,000,000 improvement to contract nursing. This necessary improvement (which was needed to keep the state-owned hospitals open) required reductions in other areas.”

Tarr said during this process of breaking the department up, the Legislature found out that appropriations they made to medical services in previous years had been redirected to contract nursing in facilities. 

“In other words, it became clear where money was being redirected relative to the Department’s appropriation request,” Tarr wrote. “The previous secretary was using a soft target request to fund mismanagement of contracts, which now exposed, is being corrected.”

Tarr said a subsection was created in the budget this year for waiver programs. He said his committee fully funded Title XIX, the Aged and Disabled Waiver, but cut all other line items, including the IDD Waiver, by 10 percent.

“The department can now transfer between waivers, but can no longer transfer to or from other sections,” Tarr wrote. “So, in short, there was a $100 million improvement to health facilities that resulted in a collective reduction of about $91 million to Human Services and Health Services.”

Mike Folio, legal director for Disability Rights West Virginia, said the budget cut not only affects those on waivers but loses federal matching dollars.

“With a budget cut of $11 million when you factor in the match through Medicaid, it’s roughly $33 million. What that translates into is diminished services,” Folio said.


Nebraska - Advocates for the Developmentally Disabled React Cautiously to Announced End of ‘Wait List’

By Paul Hammel, Nebraska Examiner, March 29, 2024

 Advocates for the developmentally disabled in Nebraska reacted cautiously to the announced elimination this week of a long-running “wait list” for state services.

Gov. Jim Pillen announced that the state was eliminating the Developmental Disabilities Registry, or wait list, in an attempt to “better support Nebraskans with intellectual and developmental disabilities.” The wait list stood at 2,704 people as of March 1.

‘Huge step forward’

The governor, during a press conference Thursday in Omaha, called it “a breakthrough way to reimagine how services are offered” that will save taxpayer dollars.

This is the first time in Nebraska history the DD Registry will be eliminated, which is a huge step forward to ensure all Nebraskans have the opportunity and support to live the Good Life,” Pillen said.

But Edison McDonald, executive director of the Arc of Nebraska — a group not invited to the press conference — said he and other advocates are reacting cautiously because not a lot of details have been laid out.

“This could just be some paper shuffling,” McDonald said Friday. “There potentially is something good in here, but it will take some work with stakeholders to figure that out.”

Advocates for the developmentally disabled and the ARC have been rallying in recent weeks for additional funding for services and providers of DD services. They have also called on the state to begin spending existing, unspent funds for such services that may have grown to up to $93 million.

The ‘good enough for you’ life

They maintain that the disabled aren’t sharing in the “Good Life” of Nebraska, but are being offered the “good enough for you” life.

McDonald said everyone wants to see the wait list eliminated, but he questions what kind of services will be offered for the $18 million the state plans to spend to do that. That averages to about $7,000 per client, he said, when the average cost of community care for a person with such disabilities is $30,000 to $50,000.

Past estimates to end the wait list, McDonald added, have been much, much higher than $18 million.

Developmental disabilities include autism, cerebral palsy, Down syndrome and fetal alcohol spectrum disorder.

A wait list for services has existed for years at the state Division of Developmental Disabilities for individuals who want to be enrolled in the Comprehensive DD waiver program, but cannot due to limited funding.

The Nebraska Department of Health and Human Services, which oversees DD services, said that the state’s new approach will “provide a full continuum of care that adapts to individuals’ changing needs as they age.”

A ‘new approach’

That, the department said, will include:

  • Medicaid for DD-eligible children who meet the required level of care.
  • Additional access to family support and day services waivers that allow families to live together.
  • Case management services for individuals who do not require waiver services.
  • Employment services.
  • Comprehensive DD waivers based on a needs assessment developed by DHHS with the support of stakeholders.

The elimination of the DD Registry, according to DHHS, will include new models of staffing including telehealth, virtual support and the expansion of independent providers. It is expected take 12 to 18 months to roll out the new policies.

But McDonald said that while it’s good news that everyone will become eligible for Medicaid, it is unclear if the state will begin spending its unspent DD funds, and concerns remain that individual budgets for care will be reduced. That could mean that not all kids with high needs will be allowed on a comprehensive waiver program.


Read the Governor's press release here

North Carolina - Workforce Woes Delay Support Services for N.C. Residents with Disabilities

By Jaymie Baxley, NC Health News, April 2, 2024

Thousands of North Carolinians with intellectual and developmental disabilities rely on caregivers, known as direct support professionals, for help with everyday tasks like bathing and eating.

But those workers are in short supply. A recent study by The Arc of North Carolina, a nonprofit that advocates for people with cerebral palsy, Down syndrome and other conditions, found that the state needs at least 20,000 more direct support professionals to meet the current demand.

That estimate is based on the waitlist for N.C. Innovations, a Medicaid program that connects direct support professionals to residents who are unable to live independently without this type of regular assistance. About 16,000 people were waiting for slots to open up in the program, which is at capacity with more than 14,000 participants, in April 2023.

Kelly Crosbie, director of the N.C. Department of Health and Human Services’ developmental disabilities division, addressed the issue during last month’s meeting of the General Assembly’s Joint Legislative Oversight Committee on Medicaid. The direct support field, she told lawmakers, is plagued by high turnover; most workers leave the profession after less than three years.

“Turnover really hurts,” Crosbie said, adding that the workforce churn creates an unpredictable situation for “consumers who need consistency” along with their family members. “It hurts families. They’re not able to go to their jobs because they need to take care of their loved one.”

The shortage also affects the behavioral health providers that employ direct support professionals. It can be “very expensive,” Crosbie said, for the providers “to recruit, retain and train new staff.”

Lack of wages, advancement a barrier

Many direct support professionals work part time or travel between several clients over the course of a day. The Arc’s study also found that of the 112,630 direct care workers employed in North Carolina in 2021, more than half were people of color, and nine in 10 of the direct care workers were women. 

One factor fueling the high rate of turnover among these workers is low pay. The average entry-level wage for a direct support professional in North Carolina is less than $15 an hour, according to The Arc. 

“Rate increases aren’t keeping up with the cost of living, so workers are able to find, in some cases, easier jobs, quite frankly, that pay better,” Crosbie said. “Sometimes it’s easier to work at the Amazon warehouse or to go work at McDonald’s or Walmart.”

Those other jobs at least come with the possibility of a promotion. Crosbie said direct support professionals have “very little opportunity for advancement.”

“Pretty much when you enter the field, you continue to do the same services,” Crosbie said. “If you have one year of experience [or] if you have 10 years of experience, there’s not a lot of room for career advancement. There aren’t stages like a lot of us have the privilege of having when we go through our careers.”

A proposed increase to the minimum wage for direct support professionals could help bring in more caregivers. Davidson, Holland, Whitesell & Company, a management consulting firm in Hickory, has estimated that raising the professionals’ starting pay to $18 an hour would cost the state about $240 million a year for a sufficiently sized workforce.

Advocates say the investment wouldn’t just benefit caregivers and their clients. Every dollar spent on direct support professionals generates up to $1.63 for the state economy, according to an analysis by The Arc.

“The impact is statewide,” said John Nash, the organization’s executive director. “Every single county has people on the waitlist.”


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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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.

Please click here to Join, Renew, or Donate to VOR

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 info@vor.net

836 South Arlington Heights Road #351
Elk Grove Village, IL 60007

Toll Free: 877-399-4867 Fax: 877-866-8377
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