March 15, 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.

March is Developmental Disabilities Awareness Month!

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:

CLICK HERE

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

Reminder:

The President's Committee for People With Intellectual Disabilities - Next Meeting March 21, 2024

The President's Committee for People with Intellectual Disabilities (PCPID) will host a virtual meeting for its members to address issues surrounding Home and Community Based Services (HCBS) to be examined in the Committee's Report to the President. All the PCPID meetings, in any format, are open to the public. This virtual meeting will be conducted in a discussion format with committee members addressing the issues and recommendations identified by PCPID workgroups proposing to be incorporated in the PCPID Report to the President.

We urge our members to attend this virtual meeting, and to submit comments (polite comments, please) to the committee regarding your loved ones and their needs for residential, medical, and behavioral services.

While the comment period is officially over, the link may still be open.

Please click here for more information, to register for the meeting, or to submit comments

Reminder:

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.

CMS Releases Guidance on Medicaid Redeterminations

With the end of the Public Health Emergency, states were required to begin “determining eligibility” for Medicaid (the federal government stalled this process during the Public Health Emergency). It has been nearly a year since redeterminations started, and this report was released by CMS today.

We hope that all of families' coverage has continued uninterrupted. Nonetheless, we recommend that anyone with questions review this report.

The first few pages is the CMS letter, but it is followed by a slide deck that's more "user friendly".



Conducting Medicaid and CHIP Renewals During the Unwinding Period and Beyond: Essential Reminders

National Coalition Sets Roadmap To Improve Health Care For Those With IDD

By Michelle Diament, Disability Scoop, March 14, 2024

An alliance of self-advocates, doctor groups and other health care leaders has a plan to transform the experiences of people with developmental disabilities as they seek medical care.

More than a dozen organizations worked alongside individuals with developmental disabilities to develop the new National Roadmap for Disability-Inclusive Healthcare, a set of goals and actions that various stakeholders should take to better prepare doctors, nurses and dentists to treat those with disabilities.

The plan, released this week, outlines steps for educational associations, regulatory and accrediting bodies and professional organizations. For example, the roadmap recommends that professional societies incentivize continuing clinical education focused on intellectual and developmental disabilities and it says that regulatory bodies should require learning about intellectual and developmental disabilities as part of licensing renewals and board certifications.

Notably, many of the groups that are empowered to make changes in the field were part of the coalition that developed the new agenda. That includes the Accreditation Council for Graduate Medical Education, which sets standards for physician residency programs nationwide, as well as the Association of American Medical Colleges, the American Dental Education Association, the American College of Physicians and the American Academy of Pediatrics.

“The National Roadmap for Disability-Inclusive Healthcare is an ambitious blueprint that can measurably change health care,” said Dr. Hoangmai Pham, president and CEO of the Institute for Exceptional Care, a nonprofit focused on improving health care for people with intellectual and developmental disabilities that brought the coalition together.

Officials with the Institute for Exceptional Care say that members of the coalition have already started to use the roadmap to work with medical associations and dental practices on changes.

Most doctors receive little if any training on developmental disabilities while in medical school and residency. As a result, research shows that just 41% of physicians feel prepared to offer people with disabilities a similar qualify of care to others.

Continued

Nebraska - Advocates for Developmentally Disabled Rally for more than ‘Good Enough For You’ Funding

By Paul Jammel, Nebraska Examiner, March 12, 2024

Advocates for the developmentally disabled filled the Capitol Rotunda on Tuesday to rally for adequate funding for service providers.

One speaker, Sarah Graham of Duet Nebraska, said that her agency has been forced to close eight to nine group homes and shutter a long-running day service center because of inadequate state reimbursement for services.

Despite a funding increase two years ago, Graham said she’s only able to pay her front-line workers $16 an hour, when today’s “living wage” for a single person is more than $20 an hour.

"Good enough for you" life

“What we’re being told is that you should settle for the ‘good enough for you’ life and not the good life,” she said, calling it a “funding crisis.”

The rally came as floor debate began in the Nebraska Legislature on the state budget.

The budget calls for a $27.5 million increase in funding for services for the developmentally disabled, of which $10 million comes from state funds and the rest from federal funds.

Advocates, during the noisy rally, called for an increase in that funding to $52 million, with $25 million in state funds attracting $27 million in matching federal funds.

Edison McDonald of The Arc of Nebraska said such a funding increase would address the state’s waiting list for DD services that is now more than 2,700 people.

Adequate funding, he said, would allow developmentally disabled residents to remain in the community; without it, it could force some into a nursing home or into homelessness.

“Imagine waking up every day and not knowing if you’ll get the support you need or not,” said Heather Snyder, a developmentally disabled woman from Lincoln who has been able to live in an apartment because of supported state services.

Continued

Iowa - Caregivers’ Group Calls on Lawmakers to Address Low Wages

By Clark Kauffman, Iowa Capital Dispatch, March 8, 2024

An organization representing front-line caregivers in Iowa nursing homes and other facilities called on state lawmakers Friday to improve workers’ wages.

The nonprofit organization Iowa CareGivers, which represents many of the certified nurse aides who provide hands-on care in nursing homes and other facilities, reported less than 5% growth in direct-care wages since 2019.

The data appears in the organization’s 2024 Direct Care Worker Wage and Benefit Brief, which shows that the median wage for certified nurse aides is now $14.42 per hour, which represents a 62-cent increase over the past four years. The data is culled from the states’ most recent labor market study.

Iowa CareGivers said the findings illustrate why Iowa’s caregivers rely heavily on various state worker supports such as childcare assistance, Supplemental Nutrition Assistance Program (SNAP), and the Children’s Health Insurance Program (HAWK-I).

“As the direct care workforce continues to decline in numbers, more Iowans will struggle to access care and supports,” said Elisabeth Buck, Iowa CareGivers board chairperson. “Direct Care Workers can’t live on current wages and, despite being passionate about caring for the individuals they serve, they are leaving the professions to find work with livable wages. We need legislators to lead the charge on wage increases for direct care workers.”

The wage study coincides with legislative debate over a bill that would effectively cap wages for caregivers who are employed through temp agencies. Republican lawmakers say the bill will provide needed financial relief for the corporate owners of care facilities, but some Democrats fear it will lower wages and exacerbate a growing workforce shortage in the field of health care.

Last month, House lawmakers approved House File 2391 on an 80-17 vote. The bill would cap what temp agencies can charge nursing homes at no more than 150% of the statewide average wage. Iowa CareGivers has not taken a position on the legislation.

According to Iowa CareGivers, the most recent data, which comes from the organization’s 2019 Direct Care Worker Wage and Benefit Survey, highlight troubling signs for businesses that rely on direct care workers:

• 56% of direct care workers in Iowa have been employed in direct care for six years or more, including just over 16% who have worked in the field for more than 20 years.
• 28% of the workers reported holding more than one job.
• 78% the workers who were looking for jobs outside the field of direct care said they were doing so to obtain higher wages.
• Nearly 10% of the workers said they planned to retire in the next five years – although more than half of those individuals said they would consider staying in the field if their wages were increased.

Read the full article here

New York - Hundreds Rally for Increased State Funding for Services for those with Disabilities   

By Scott Willis, WAER Radio, March 8, 2024

Nearly 300 people filled a room at the state fairgrounds Friday to call for increased funding in the state budget to support staff and services for those with disabilities. The “We Matter” rally was jointly hosted by AccessCNY and ARC of Onondaga to call on state lawmakers and Governor Kathy Hochul to add just over $250 million to the budget. AccessCNY executive Director Paul Joslyn says that will cover a 3.2 percent cost of living adjustment and what he calls a $4,000 dollar wage retention and enhancement for direct support professionals.

“The relationship between DSP's and those they serve is critical. It is the core of what we do as human service agencies," Joslyn said. "A lack of DSPs mean that people cannot live the lives that they deserve as active participants in our shared community.

Raven O’Neil is a residence manager at ARC of Onondaga who worked as a DSP for seven years.

“We’re their chefs, we’re their counselors, we’re their teachers, we’re their friends, we’re their extended family who make an impact on every aspect of their lives," O'Neil said. "It is inspiring to see the difference we make in the lives of the people we support. We are everything to them, and again, we matter," she said as the crowd applauded. 

Eric Maddox first met Larry Hart over a year ago at one of the houses operated by AccessCNY, and knew the same day that Hart would be his new boss, friend, and motivator. Hart uses a wheelchair and has limited speech.

“He has taught me so much about communication, listening, not speaking and most importantly, passion for whatever you do," Maddox said. "I often wonder how long will I be able to stay at this job? Not because I don't like it, but can I afford to stay in this position? I wish this was a question that I had answers to, just like many of my peers in this room.”

Continued

Dozens with Disabilities are Without Schooling for Years Due to Apparent Staffing Shortage

By Ben Nandy, News 12 Westchester, March 14, 2024

Joe Durante, 30, has been waiting for more than a year to obtain one of the limited local slots for day programs for people with disabilities, and recently learned he might be waiting much longer.

According to a recent email provided to News 12 by the Durante family, the Arc of the Greater Hudson Valley does not have enough staff to serve Joe, nor about 80 other Orange County residents on the waiting list for programs.

The Durante family moved from Brooklyn to Greenville just over a year ago into a house that better suits the needs of Joe, who lives with cerebral palsy and uses a wheelchair.

Joe -- aware of the stakes and aware of his father Tony's frustration -- cried when the staffing shortage was brought up during an interview Thursday in his living room.

Joe said he has had trouble making new friends since moving here "because it's boring here" at the house all day, every day.

Tony Durante showed News 12 an email he said he received last week from one of the directors of the Arc's day programs.

"I have no idea when an opening will happen in program," the director wrote. "We have transportation limitations and program limitations due to staffing. As we have availability we look at the wait list and see whom we can bring in. As we said, we do have a waitlist and there are approximately 80 people on it for Orange County. Some have been waiting since early 2021."

"We understand," Tony said after reading the email. "There's a wait involved. So we'll wait. So now we've waited a year. Now I found out that others have waited three years?"

In an email to News 12 late Thursday, Arc Executive Director Regina McKenny Snead did not provide figures but did recognize a serious staff shortage.

“We, like all providers in the field, continue to experience staff shortages impacting the lives of New Yorkers with I/DD (Individuals With Developmental Disabilities) and their families every day,” she wrote. “There are more people in need of supports than there are staff available to provide them. We, like many providers, work with people to meet their needs wherever possible. Those needs are each unique.”

McKenny-Snead said her staff recognized that "there are still people in our communities in need of services."

She did not respond to questions about potential solutions.

Continued

‘Horrific’: Idaho Investigation Finds School District Failed Students with Disabilities     

By Becca Savransky, Idaho Statesman, March 14, 2024

The Garden Valley School District failed to identify and provide services for students with disabilities in violation of federal law, an investigation from the Idaho State Department of Education found.

The investigation came in response to a complaint filed by parents Drew Branham and his spouse, David McCann, who alleged systemic problems in the district and said students with disabilities were being denied their state and federal rights.

Branham told the Idaho Statesman that the district has a long history of “horrific behavior targeting children with special needs and disabilities.” He previously filed a complaint that his daughter had been “abused” by staff members and that the district hadn’t been willing to meet her needs. That investigation found the district violated laws by restraining and secluding their daughter and not providing learning opportunities.

McCann said he and Branham decided to file a complaint of systemic problems after learning how many other children had similar experiences. They heard stories from about 20 families that shared concerns, he said.

“We chose to fight for these children and to expose the systemic issues in the hopes that GVSD will make drastic improvements to prevent this from happening again,” Branham said in an emailed statement. “We will not stop fighting and advocating for these sweet children who cannot advocate for themselves.”

The State Department of Education’s investigation involved interviews with district staff and reviews of documents for 47 students with disabilities. The State Department of Education investigated seven allegations and found the district out of compliance with all but one of them.

The district violated several parts of the federal Individuals with Disabilities Education Act, which governs the way states and public agencies provide services for students with disabilities and requires every student have access to a free appropriate public education, the report said.

The district failed to make sure all students with disabilities who needed special education services were evaluated and identified, and it didn’t develop students’ individualized education plans (IEP) correctly or consider the use of positive behavioral interventions, according to the report. The district also didn’t educate students in the least restrictive environment, as required under law.

Read the full article here

Some Teachers Less Likely To Refer Kids For Special Education, Study Finds

By Shaun Heasley, Disability Scoop, March 15, 2024

New research suggests that a child’s likelihood of being referred for special education services is greatly influenced by the race of their teacher.

Black teachers are less likely to identify children for disability services, according to a study published this month in the American Educational Research Journal. Though the trend held for both white and Black students, it was particularly pronounced for Black boys especially if they are economically disadvantaged.

“It may be that Black teachers interpret certain behaviors as simple inattentiveness rather than a disability, or that Black students respond to Black teachers with more engagement,” said Constance Lindsay, an assistant professor of educational leadership at the University of North Carolina at Chapel Hill and an author of the paper.

For the study, researchers looked at administrative data from North Carolina elementary schools between the 2007–2008 and 2012–2013 school years. They found that the disparity in special education identification was especially strong in categories where there is more discretion like learning disabilities.

“Our results add to the growing evidence for why diversifying the teacher workforce is important for improving student outcomes from all backgrounds,” said Cassandra Hart, a professor of education at the University of California, Davis, who worked on the study. “Beyond that, school districts may want to consider providing clear guidance to teachers around when they should urge screening for disabilities, to minimize the role of teacher discretion in the identification process.”

Read the full article here

Fatal Shooting Of Teen With Autism Raises Concerns About Police Response

By Hannah Fry, Los Angeles Times, via Disability Scoop, March 14, 2024

Ryan Gainer, a teen with autism, was a cross-country runner who worked out his frustrations with six-mile runs and dreamed of becoming an engineer.

On Saturday afternoon, the 15-year-old became upset that his parents had demanded he complete his household chores before he would be allowed to play video games or listen to music on his computer, according to DeWitt Lacy, a civil rights attorney representing Ryan’s family.

“He got upset. Any teen would be upset by that,” Lacy said. Some people with autism experience more heightened emotions and on that day Ryan responded by breaking glass on the front door, Lacy said.

A family member called 911 for help, asking dispatch to send deputies to “take him in” because he was breaking glass and hitting his sister, according to a portion of the call released by the San Bernardino County Sheriff’s Department.

But instead a responding deputy fatally shot the teen, saying he had threatened the deputy with a garden tool.

Ryan’s death has heightened concerns from activists about law enforcement’s use of force against people suffering from mental health issues and the lack of supportive services available for families when they call police for help.

The death was not the first."

Continued

Bill that Threatens Jobs at Sheltered Workshops Moving Through State House

By WJBD Staff, March 11, 2024

State Representative Charlie Meier is leading a charge to oppose legislation that would require sheltered workshops like the Kaskaskia Workshop to pay minimum wage to their clients with intellectual and developmental disability.

Meier told a news conference in Springfield last week that the state needs to create opportunities before they close the others.

“There are 3591 clients we believe in the state of Illinois. Where this has been done in other states, a lot of times 70-80% of these residents never work again. So as you look at our clients here with the shirts on today, my work my choice, think about 2513 of them never working again at 70%.

Meier says service providers do a fantastic job, but many of them would be unable to pay minimum wage.

“A lot of their workers work at 12% of what a normal worker works. So in that 10 hour time they will pay that worker $140. Where one college student can do that job in 1 hour at $14.”

Continued

Woman Abused, Neglected Disabled Adults Across 5 North Texas Group Homes, Police Say

By Shaun Rabb, KDFW Fox 4, March 11, 2024

Arlington police say neglect and abuse were taking place in five group homes housing adults with mental and physical disabilities. 

The operator of Loving and Caring for People LLC has been arrested. Police say there could be more arrests and more victims.

What was allegedly happening in the dark of the group homes came to light late last year when a resident at one of the homes made an outcry to a neighbor to help him get away.

A home in a quiet Arlington neighborhood served as a group home to people who depend on others for care. Neighbors and police say the care was scarce.

"One day, I was in my backyard, and there was an elderly guy back there. Looks like he had cerebral palsy or something," recalled one neighbor. "He asked me to call 911 ‘cause he was trying to escape. So we called the cops and got them out here with the ambulance and fire trucks and stuff, and they’ve been out here a couple of times since."

That started a four-month investigation leading to the arrest of Regla Su Becquer, who is charged with abandoning/endangering an individual, imminent danger of bodily injury."

"About a week ago, I saw some police come. And then shortly after that, that evening, there were ten large suitcases that were pulled out into the front yard," Owen said.

Arlington Police Lt. Kimberly Harris leads the police department’s behavioral health unit.

Five group homes operated by Becquer across Arlington, Mansfield and Grand Prairie are part of the investigation.

"I’m angry," Harris said. "Some of these individuals were not mobile. They were unable to leave their bed, or they were wheelchair-bound. In one instance, a gentleman was wheelchair-bound, however he had no wheelchair at the home and was unable to go around or getting anywhere in the house. He had to crawl. He had scars from crawling around."

Police say residents were neglected and their debit cards abused.

Deceased clients’ possessions, like vehicles, were allegedly kept by Becquer.   

"One of the first things that set off warning bells for us was the amount of people that we suspected she was caring for, the condition in which we found the individuals," said Kelly Land, a crisis intervention specialist. "Again, this is an open investigation, but there were some warning signs in terms of the care of these individuals."

Police wonder if there are more homes and more potential people suffering silently.

Continued

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

VOR SUPPORTS:

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.

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.

S.1332 / H.R.2941 - Recognizing the Role of Direct Support Professionals Act

Sen Maggie Hassan (D-NH) / Rep. Brian Fitzpatrick (R-PA) This bill requires the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.

H.R. 553 - Workplace Choice and Flexibility for Individuals with Disabilities Act

Rep. Glenn Grothman (R-WI-6) - This bill would amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.

H.R.1296 - Restoration of Employment Choice for Adults with Disabilities Act Rep. Glenn Grothman (R-WI-6) - To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.485 - Protecting Health Care for All Patients Act of 2023

Rep. Cathy McMorris Rodgers (R-WA-5) - This bill prohibits all federal health care programs, including the Federal Employees Health Benefits Program, and federally funded state health care programs (e.g., Medicaid) from using prices that are based on quality-adjusted life years (i.e., measures that discount the value of a life based on disability) to determine relevant thresholds for coverage, reimbursements, or incentive programs.

H.R.670 - Think Differently Database Act

Rep. Marcus Molinaro (R-NY-19) - This bill would amend title IV of the Public Health Service Act to direct the Secretary of Health and Human Services to establish a clearinghouse on intellectual disabilities, and for other purposes. Such clearinghouse shall include information on individual community-based services and long-term support services available to individuals eligible for medical assistance under a State plan under the Medicaid program under title XIX of the Social Security Act.

S.1298 - Supporting Our Direct Care Workforce and Family Caregivers Act

Sen. Time Kaine (D-VA) A bill to award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers.

H.R.2965 / S.1333 - Autism Family Caregivers Act of 2023

Rep. Grace Meng (D-NY) / Sen. Robert Menendez (D_NJ) To award grants for providing evidence-based caregiver skills training to family caregivers of children with autism spectrum disorder or other developmental disabilities 

H.R.3380 - HEADs UP Act of 2023

Rep. Seth Moulton (D-MA) This bill authorizes the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary.

VOR OPPOSES:

S.533 / H.R.1263 Transformation to Competitive Employment Act

Sen. Bob Casey (D-PA) / Rep. Bobby Scott (D-VA 3) - This bill would support employers who wish to transform their facilities to provide only competitive integrated employment while forcing the elimination of programs that offer employment opportunities under Section 14(c) of the Fair Labor Standards Act. This bill would be unlikely to create a significant increase in employment for people with I/DD and autism, but would deprive over 120,000 individuals of the opportunity to work, develop skills, and be part of their community.

S. 1148 - The Guardianship Bill of Rights

Sen. Bob Casey (D-PA) - A bill to establish rights for people being considered for and in protective arrangements, including guardianships and conservatorships, or other arrangements, to provide decision supports. This bill would give ACL power to create a Guardianship Council and appropriate more money to P&As so they may encourage people to leave guardianships and move to Supported Decision Making. Dangerous over-reach in response to media hype on Britney Spears, et al.

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.

VOR HAS SIGNIFICANT CONCERNS WITH:

S.100 / H.R.547- Better Care Better Jobs Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) This bill establishes programs and provides funds for state Medicaid programs to improve home- and community-based services (HCBS), such as home health care, personal care, case management, and rehabilitative services.

The bill also makes permanent (1) the Money Follows the Person Rebalancing Demonstration Program (a grant program to help states increase the use of HCBS for long-term care and decrease the use of institutional care), and (2) certain provisions regarding Medicaid eligibility that protect against spousal impoverishment for recipients of HCBS.

S.762 / H.R.1493 - The HCBS Access Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) While this bill purports to eliminate waiting lists and provide more Home and Community-Based Services for people with I/DD and autism, it favors the aspirations of those individuals who are most independent and neglects the very real needs of those most dependent on Medicaid Long-Term Services and Supports. It would not distribute funds appropriate to the varying needs of individuals, but to providers of HCBS programs. It fails to recognize the severity of the DSP and Nursing Crises, and paints an unrealistic picture of a simplistic solution. This is a purely political bill that would ultimately fail to make the extensive changes that the DD/A system needs.

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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