February 2, 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.

Several of the articles that appear in today's newsletters were submitted by VOR members, in addition to our usual resources for gathering information relevant to our families. Again, we encourage our members to share news articles with us at [email protected].

We can't guarantee we will print every article submitted, but we definitely appreciate your sharing these stories with us.

We'd like to start this week with a personal story from the father of a child with a pronounced disability. Though not a VOR member himself, Mr. Reid's words will resonate with many of our members:

So Your Child’s Been Diagnosed With a Rare Genetic Disorder

By Stuart A. Reid, Slate, January 28, 2024

You did not think you’d be here in the hospital, holding a sheaf of papers printed out by a doctor and handed to you, a report on your new child’s genetic code. The letters and numbers are meaningless, like a browser-suggested password—STXBP1 in our case—but you will come to know them well. You will remember this moment for the rest of your life.

Under “variant classification,” you see the word “pathogenic.” You see a list of symptoms, some unknown and worthy of Googling and others all too obvious. “Epilepsy.” “Encephalopathy.” “Autism.” “Hypotonia.” “Severe intellectual disability.” That last one sounds especially bad.

The doctor knows she is delivering bad news, but she has also solved a mystery. Things had seemed normal at first. A textbook birth resulting in a beautiful baby girl, driven home from the hospital with a cap and a onesie and swaddled in a blanket printed with pizza slices. But there was something off. Was it just hiccups? Typical infant twitchiness? No. It kept going. A whole album filled with videos of the shaking. The best one—rhythmic jerking, locked eyes, good lighting—sped things up at the emergency room. Such a clip is the ultimate VIP pass at a busy hospital, proof that you are not just another anxious new parent. Then came the neonatal intensive care unit, the application of a web of electrodes to the scalp, the first seizure caught on an electorencephalogram, a massive does of phenobarbital, consent for a "whole genome sequencing" - just one of many tests, no more portentous than the last - a brief return home, more seizures, and another hospital stay. And now, the results.

Next will come a weekslong crash course in Genetics 101, in which you learn that the decision to have a child was actually a roll of the dice, a gamble that works out for most but not all. You may learn for the first time that there are genetic disorders that are not in fact inherited. These are “de novo” mutations that pop up randomly; most are far too rare to be worth testing for prenatally as a matter of course.

What are the odds? you ask of your disorder (it is now yours too), and an answer comes back: 1 in 30,000. As you contemplate just how unlucky you are, you may recall a slide that flashed before your earth sciences class in college: a photograph of a meteorite that has crashed through the ceiling of someone’s living room, under the caption “low-probability events do occur." Yes, you thought. Just not to me.

Continued

Save The Dates!

May 6 - 8, 2024

Back to Capitol Hill!

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

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

WE NEED YOUR HELP

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

With whom would you like to meet?

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

Please reach out to us at [email protected]

and let us know if you might be interested in attending

(no obligation)

or if you would prefer to stay home and Zoom.

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

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

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

Please reach out to us at [email protected]

Caregivers Spend a Whopping $7,200 Out Of Pocket. New Bill would Provide Tax Relief

By Betty Lin-Fisher, USA Today, Jan 31, 2024

More than 48 million Americans are caregivers, providing more than $600 billion in unpaid care for their loved ones. That’s doing everything from helping prepare meals and paying bills to assisting with medication and medical/nursing tasks in order to help parents, spouses and loved ones live independently in their homes. 

Sixty-one percent of those caregivers also have a part-time or full-time job, on top of their caregiving responsibilities. The average caregiver in the U.S. spent $7,242 in out-of-pocket costs in 2021, according to the AARP. 

But a new bill could offer caregivers some financial relief.

On Wednesday, a bipartisan group of U.S. Senators and members of the U.S. House of Representatives reintroduced a piece of legislation that would provide help in the form of a federal tax credit for eligible working family caregivers. 

AARP has been working with legislators for eight years on previous versions of the bill. But senior AARP leaders told USA TODAY that they believe the time is finally right for it to become law – and bring relief to many caregivers, including members of Congress.

The Credit for Caring Act, if passed, would provide financial support for individual caregivers by providing up to a $5,000 nonrefundable federal tax credit for eligible working family caregivers, that would cover 30% of qualified expenses they incurred above $2,000.

The bill would help cover some of the more than $7,200 that families spend on average each year on out-of-pocket caring costs, such as home care aides, adult day care, respite care, transportation, home modifications, or other supports.

Family caregivers would have to document what family caregiving expenses they've had out of pocket above $2,000 to qualify for the credit, said Bill Sweeney, AARP’s senior vice president for government affairs.

The bill could also help boost the U.S. economy by keeping more caregivers in the workplace. According to an AARP analysis, if caregivers ages 50 and older had support in the workplace, the U.S. gross domestic product could grow by an additional $1.7 trillion (5.5%) by 2030. 

The most recent version of the bill is being introduced Wednesday in both chambers of Congress. In the Senate, Sen. Michael Bennet, D-Colo., is the lead sponsor with co-sponsor Sen. Shelley Capito, R-W.Va., and in the House of Representatives, the lead sponsor is Rep. Mike Carey, R-Ohio with co-sponsor Rep. Linda Sánchez, D-Calif. Original co-sponsors also include Sens. Elizabeth Warren, D-Mass., Susan Collins, R-Maine, Maggie Hassan, D-N.H., and Lisa Murkowski, R-Ark. 

Sanchez said the bill, if passed, could ease the "great burden on many families across the country."

Read the full article here

Read the press release from the bill's sponsors here

It’s Unanimous: CMS Needs to Bring More Transparency to Medicaid Managed Care

By Andy Schneider, Georgetown University - McCourt School of Public Policy, January 31, 2024

Last week, MACPAC Commissioners voted to recommend that the Centers for Medicare & Medicaid Services post all state Managed Care Program Annual Reports (MCPARs) to the CMS website. The vote was unanimous: 17-0. The recommendation will be included in MACPAC’s March 2024 Report to Congress. At first glance, this may seem unremarkable, but on further examination, it could augur the beginning of a new chapter in the evolution of Medicaid managed care—one in which transparency brings greater accountability of individual managed care organizations (MCOs) for their performance, and greater accountability of state Medicaid agencies and CMS for their monitoring and oversight.

But before we get too carried away, let’s unpack what just happened. As students of Medicaid acronyms well know, MACPAC—aka the Medicaid and CHIP Access and Payment Commission—is a nonpartisan agency established by Congress to provide it with information and policy analysis independent from that available from CMS or the White House. MACPAC has 17 commissioners appointed by the Comptroller General, who heads up the Government Accountability Organization (GAO). MACPAC holds public meetings and submits reports to Congress every March 15 and June 15 containing recommendations for improving the Medicaid and CHIP programs.

As Medicaid acronyms go, MCPAR is far more obscure than MACPAC. In part this is because the Managed Care Program Annual Reports are, with a few exceptions, not accessible to the public on state Medicaid agency websites or on the CMS website Medicaid.gov. (As of December 2023, only six states posted their MCPARs. 

The MCPARs contain information on how each of the MCOs with which the state contracts performed during the previous contract year, including medical loss ratios, quality metrics, and sanctions imposed. The standardized reporting template (in the form of an excel workbook) allows for comparison of performance among MCOs (and their parent companies ) and among states.

States are required to submit MCPARs to CMS within 180 days after the end of each MCO contract year. To date, states have submitted MCPARs to CMS for the first reporting cycle, which includes the contract year July 1, 2021 through June 30, 2022 as well as the contract year January 1, 2022 through December 31, 2022. The MCPARs for the second reporting cycle, beginning with contract period July 1, 2022 through June 30, 2023, should now be in. CMS has not yet posted any of the MCPARs it has received.

Over the past year, one of the issues on MACPAC’s agenda has been denials and appeals in Medicaid managed care. The MACPAC staff analysis resulted in seven recommendations, ranging from Congress requiring states to establish independent, external medical review of prior authorization denials to CMS posting the MCPARs on its website “in a timely manner following states’ submissions to CMS.” These were presented to the commissioners at their January 25 meeting.

The MACPAC commissioners, by design, bring a wide range of perspectives to their task. They include former CMS managers, former state Medicaid and CHIP agency directors, MCO executives, and Medicaid consultants to state agencies and MCOs (the list includes CCF’s own Tricia Brooks). They are perfectly capable of disagreeing, as they did in the case of the recommendation relating to external medical review, which 3 commissioners voted against and 1 abstained. On the recommendation that CMS post the MCPARs, however, there was no disagreement.

Their rationale for the recommendation was straightforward: “Currently there is little transparency on MCO approvals and denials of services, limiting what is known about beneficiary access to medically necessary care.” Leveraging the MCPARs by posting them “would bring greater oversight and accountability to managed care programs and provide beneficiaries with key information on denials and appeals.” "

Continued

Medicaid: What to Watch in 2024

By Robin Rudowitz, Jennifer Tolbert, Elizabeth Hinton, and Alice Burns, KFF, January 30, 2024

Create a great offer by adding words like "free," "personalized," "complimentary," or "customized." A As the start of 2024, many issues are at play that will affect Medicaid coverage, financing, and access. Medicaid is the primary program providing comprehensive health and long-term care coverage to one in five low-income Americans. The unwinding of the Medicaid continuous enrollment provision started on April 1, 2023, and will continue to be the dominant Medicaid policy issue in 2024. However, adoption of the Affordable Care Act (ACA) Medicaid expansion and other coverage and access expansions, efforts to address social determinants of health and facilitate re-entry for individuals transitioning from incarceration, long-term services and supports (LTSS) workforce, and Medicaid financing are also key areas to watch. Medicaid may not be a major issue in the presidential election, but debate about repeal and replace of the ACA, Medicaid work requirements, and federal financing for Medicaid could emerge as national election issues. In addition, as a major source of coverage for births, Black, Hispanic, American Indian or Alaska Native and Native Hawaiian or Other Pacific Islander populations, some lawfully present immigrants, low-income children, working-age people with disabilities, and people needing long-term services and supports, Medicaid may underpin larger 2024 election issues. At the same time, many states have seen revenues decline recently, which could increase pressure to reduce spending in Medicaid and other programs. This issue brief provides context for these Medicaid issues and highlights key issues to watch in the year ahead.

• Unwinding of the Continuous Enrollment Provision
• Workforce Challenges in Long Term Services and Supports and Behavioral Health
• Medicaid Financing

What to Watch

The issues identified in this policy watch could have major implications for Medicaid coverage, financing, and access. As these issues play out, the following key questions will be at the forefront:

• Who will win the presidency and control Congress, which will have major implications for Medicaid policy going forward?
• How will the Medicaid unwinding affect Medicaid enrollment and changes in coverage, including increases in the number of people who are uninsured?
• Will states adopt Medicaid coverage expansions in 2024, including Medicaid expansion or multi-year continuous eligibility for children?
• How many states will advance new initiatives to use Medicaid to address health-related social needs or facilitate transitions from incarceration in 2024?
• How will federal and state efforts to address workforce shortages for LTSS and behavioral health evolve in 2024?
• How will state fiscal conditions and broader economic factors affect Medicaid spending as well as state and federal Medicaid policy?

Read the full article here

ACL / NIDILRR Announces 2024–2028 Long-Range Plan

ACL is pleased to announce the release of the 2024–2028 Long-Range Plan (LRP) for the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).

“Our new long-range plan presents a bold research agenda for the next five years and represents an important evolution in how we think about, describe, and engage on research topics related to disability,” said NIDILRR’s director, Dr. Anjali Forber-Pratt. “The plan lays out a modernized approach to guide our planning and activities, with a focus on ensuring that people with disabilities are centered in all facets of disability research and increasing expectations for inclusion, accessibility and workplace supports for disabled people. It sets the bar high for all of us in the disability research field – starting with NIDILRR itself.” 

Click here to go to the ACL's announcement

Editorial note: Among the many "one-size fits all" projections made by ACL's subsidiary, are proposals for new employment research. One example of the NIDILRR's vision:

• Focus on the needs and experiences of day habilitation program participants. Despite the focus on expanding opportunities for CIE and the closure of segregated workshops and subminimum wage jobs, many people with disabilities are still being served in day habilitation programs instead of working in CIE. There is a need for focused research on the employment experiences and outcomes of people with disabilities in these programs. Such research can document the experience of program participants and create an evidence base for targeted services and supports to achieve their CIE.

It would appear that the ACL will continue to ignore the needs of people with severe/profound I/DD and autism, just as they will continue to ignore the fact that there are some people with I/DD or autism who will never be a participant for competitive integrated employment.

Census Weighs Overhaul Of Disability Questions

By Michelle Diament | January 29, 2024

The U.S. Census Bureau says it received thousands of comments after proposing major changes to the way it counts the number of Americans with disabilities and is deciding whether to finalize the plan.

The agency put forth a proposal in October to update its American Community Survey, which included substantial modifications to its disability questions.

Under the plan, the series of six disability questions would be reordered, reworded and a new question would be added to ask about psychosocial and cognitive disability as well as problems with speech. But potentially the biggest change is that rather than simply responding with “yes” or “no,” people would be asked to rate the level of difficulty they have with various functions. In order to be counted as having a disability, advocates say that the model proposed by the Census requires that a person respond to at least one question with “a lot of difficulty” or “cannot do at all.”

Disability advocates said they were blindsided by the proposal and they have warned that if it’s adopted, the new approach could lead to a 40% drop in the count for this population. That could bring huge consequences since Census figures are used to inform federal funding allocations and other decisions related to everything from affordable housing and transportation to health care, enforcing civil rights and more, advocates said.

Continued

New York - Editorial: Give Pay Parity to the State's Direct Support Workers

From the Editorial Board of the Buffalo News, February 2, 2024

New York State’s failure to budget fairly and equitably for direct support professionals working in the not-for-profit space will one day prove unsustainable. That day cannot be far away.

The risk is that dedicated professionals who do the hard work to take care of our neighbors, family and friends, will finally quit in numbers too large to replace. Then what? People Inc. has already closed two group homes in Boston and Angola, where recruiting in rural areas is just hard because there is not the density of population from which to recruit. It’s not just People Inc.; other not-for-profit agencies have also closed group homes.

Advocates argue that the state’s budget failed to meet the necessary threshold of funding to pay DSP’s and the not for profits that hire them. Again. Rinse, wash, repeat. This cycle must stop.

Start with parity. Pay workers at not-for-profits – who start at around $30,000 a year – the more than $50,000 starting wages paid to their state CSEA-union counterparts.

Neither not-for-profit workers nor state workers are getting rich. They all work long hours diapering, toileting, providing behavioral interventions, dealing with medical administration. They are critical for the people to whom they provide care. Many people love this job, but the pay is inequitable compared to minimum wage and state counterparts. They also have families to support.

There is a way to get these valuable workers on par with their state counterparts.

Representatives of the Developmental Disabilities Alliance of Western New York, which includes People Inc., Aspire and other organizations, point out that the cost-of-living adjustments they request are supposed to arrive every year, and be tied to the consumer price index. This year they are requesting a 3.2% cost-of-living adjustment and $4,000 wage enhancement per eligible DSP in the not-for-profit agencies.

The $4,000 wage enhancement would cost the state $125 million. That would bring direct support professionals somewhat closer to the income of state workers. The 3.2% wage increase would provide equality that would retain and attract workers and, with that, improve care provided by their strapped agencies.

The state budget would have to provide $95.7 million for the 3.2% cost of living adjustment to help with the cost of doing business. Last year, the Developmental Disabilities Alliance asked for an 8.5% cost-of-living adjustment and received 4%. There is still a long way to go to even the playing field.

Continued

Why Kansans are Waiting a Decade-Plus for Aid for Developmentally Disabled Family Members

By Jack Harvel, The Topeka Capital-Journal, January 27, 2024

Rick Elskamp’s daughter Sheridan was officially removed in December from the Intellectual and Developmental Disability Waitlist, a ledger of applicants seeking Medicaid-reimbursed support services.

It’s welcome news for Elskamp, who has been paying for the 23-year-old’s daycare service for the past year out of pocket. The total cost without a waiver is upward of $20,000 a year, a price Elskamp didn’t have to fully pay thanks to the service providers willing to negotiate a lower rate due to the lack of outside funding.

Though still not given resources promised to accepted I/DD voucher-holders, Elskamp’s time on the waitlist is almost over. But its difficult financial impact and rearranging of the family’s work life could have been much harsher if they didn’t have the foresight to apply for the program more than 10 years ago.

“It’s worked out as best as it could," Elskamp said. "But still, the whole system, we found out how bad it has gotten, how much it has failed us, how much it continues to fail families that are on the waitlist.”

To have gotten services at the time they did, they had to apply when Sheridan was 12 years old. Had a middle school special education teacher not raised the issue, it may have gone unnoticed and Sheridan denied services even longer. When finding day services for Sheridan, Elskamp and his wife had difficult decisions to make between costly day service or staying at home with their daughter.

“It was either ($20,000 a year day service) or one of us were going to have to either cut back or quit our job to stay with her because we really had no other options,” Elskamp said.

Sheridan was just one of 5,187 people in Kansas who were awaiting an I/DD waiver as of December.

What is Kansas waiting for?

Kansas is obligated to serve around 9,100 people through an I/DD Waiver. Once that obligation is met, the state can start a waitlist. Waivers cover a range of assistive services from such simple things as a medical-alert rental to more comprehensive supports, such as in-home care.

The waiver’s recipients are evaluated by a one of 27 Kansas regional community developmental disability organizations, which determine a person’s eligibility for services and works with families on what programs they can use.

The I/DD waitlist is part of the broader Home and Community Based Service waivers, which includes seven different waiver programs aimed at addressing physical and intellectual disabilities, youth mental health and medical challenges for the elderly.

It rose to prominence during the deinstitutionalization of America’s mental health care systems, where patients moved from psychiatric hospitals toward home-based care. Until the late 1990s, Kansas managed to keep the list comparatively low, but the list has grown steadily over the past two decades.

Rocky Nichols, executive director of Disability Rights Center of Kansas, said the cause of the backlog is simply because there hasn’t been an increase in funding to see more than 9,100 people. Over the past few years, investments into this program have largely gone to increase funding to the service providers who are contracted through HCBS.

“They’ve gotten a 45% to 46% or greater increase in the rate that providers get, and that has made slots more expensive because for every slot you’re going to fund, providers are getting more,” Nichols said.

Nichols said increasing the money home-based care professionals make — which has historically been low-paying and demanding work — is good. The problem lies, he said, in funding an increase for one side of the equation without addressing the growing waitlists.

Continued

Iowa Pays More, but Gets Less, for Special Education

By Clark Kauffman, Iowa Capital Dispatch, January 30, 2024

Create a great offer by adding words like "free," "personalized," "complimentary," or "customized." A A consultant’s report on Iowa’s Area Education Agencies suggests Iowans are paying considerably more than other states for special education but are getting less in terms of student achievement.

The study, which the governor’s office made public Monday, pertains to Iowa’s nine Area Education Agencies. The AEAs provide special education services to schools throughout the state, as well as media supplies and services and professional training for teachers.

The Guidehouse consulting firm found that school districts are required by law to “cooperate” with AEAs in providing special education instructional programming, and that the AEAs exercise “vast control over the education of students with disabilities with little oversight from school districts and the Iowa Department of Education.”

Iowa spends $5,331 more per-pupil on special education than the national average, but Iowa’s students with disabilities perform below the national average, the consultants reported. Noting that the AEAs were created by statute to “be an effective, efficient, and economical means” of serving students with special-education needs, Guidehouse stated those same students are currently “struggling to reach academic proficiency in comparison to students with disabilities across the nation.”

In addition, federal annual performance audits show that Iowa’s AEAs are a factor in Iowa failing to comply with certain federal standards. In the report, Iowa is cited as one of only 13 states to be placed in the “needs assistance” category for two or more consecutive years in some areas of federal compliance.

Continued

Related story: Cuts to AEA services “not something we can afford to get wrong,” parent says  

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

VOR SUPPORTS:

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

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

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

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

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

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

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

H.R.670 - Think Differently Database Act

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

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

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

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

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

H.R.3380 - HEADs UP Act of 2023

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

VOR OPPOSES:

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

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

S. 1148 - The Guardianship Bill of Rights

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

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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Direct Support Professionals!

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