January 12, 2024

VOR's Weekly News Update

VOR is a national non-profit organization

run by families of people with I/DD and autism

for families of people with I/DD and autism.

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As seen in this week's newsletter, the disparities of services provided for people with I/DD and autism remain firmly entrenched.

We have known for years that these disparities have existed along the lines of race, economic status, and degree of disability. The reports from NIH, the new protocols of the U.S. Census, and the increase in funds for ABLE accounts (a good thing, for those who can afford them) are all examples of these discrepancies.

What's more, those overseeing policy and allocations continue to focus on Inclusionism, as favored by self-advocates and low-needs individuals, repeating the mantra of "everyone does better in the community" despite mounds of evidence to the contrary.

The DD System, as we know it, meets the needs of some people, only meets some of the needs of others, and fails to address the needs of many others. Beyond the obvious waiting lists for HCBS services, very real, critical issues such as the shortage of Direct Support Professionals across all services, the need to re-invest in the ICF system by increasing availability of services in state-operated ICFs and increasing subsidies for privately-operated ICFs to keep them competitive with HCBS funding, the need for increased behavioral health services for people living at home and in long-term residential care facilities of all types, and the need for more opportunities for meaningful employment (where meaningful is not defined by the hourly wage) are but a few of the issues that remain overlooked by HHS, the ACL, DOJ, and the DOL.

Case in point, CMS recently issued a report on initial spending under the American Rescue Plan Act (ARP). Not only was ARP designed to cover only HCBS providers, but as a temporary bill, it fails to address the long-term problems that exist within the system. ARP cannot increase wages for DSPs, because there are no allocations for sustaining such increases after ARP funding expires. So money goes to providers to help them create programs that might lead to workforce development. Money does not go to help people off of waiting lists, again because there are no allocations to continue to provide for these services.

Instead of being a solution to long-term problems within the DD System as a whole, ARP is essentially a gift to providers and state agencies.

Our families, our loved ones, deserve better.

What's Happening In Your Community?

Do you have information or a news story you would like to share?

Is there legislation in your state that needs attention?

Please contact us at [email protected]

National News:

How to Ensure the NIH’s Decision to Recognize People with Disabilities as a Health Disparity Population Makes a Difference

By Lynne Moronski, STAT News, January 11, 2024

My daughter Katie was born with severe disabilities. She went on to develop profound autism, attention deficit disorder, and obsessive-compulsive disorder. The hardest part for her is knowing that she’s different but not understanding how or why. My career as a health care manager and now a researcher has been derailed and fragmented because I have a profoundly disabled daughter who has undergone so many treatments and required special schools.

Still, she has grown up. At 21, she now has health insurance and stable income through Medicaid and Social Security. She is fortunate to live in 24/7/365 state-supervised residential housing. The abrupt transition from school-age support to limited adult services is aptly termed “the cliff.” I often wonder: What will happen to my daughter when I am too old to advocate for her?

The good news for both of us is that as of late September, the National Institutes of Health recognizes people with disabilities as a minority population that experiences health disparities. Other recognized health disparities groups include racial and ethnic minorities, people with low socioeconomic status, rural underserved communities, and sexual and gender minorities. This new designation will eventually bring new research-based, systemwide interventions, leading to improved health outcomes.

Twenty-seven percent of the U.S. population lives with a disability, and nearly half of those say they are in bad health. Those with disabilities face a greater incidence of physical and mental ailments, including obesity, diabetes, cardiovascular disease, addiction, and mental illness, as well as increased rates of morbidity and mortality. They struggle to access high-quality medical care and suffer from stigma, biases, and ableism. People with disabilities are also subject to social disadvantage and marginalization.

Navigating the medical system is fraught with danger for these folks. Over 80% of medical students say they receive no disability training. Nurses aren’t well equipped to care for their complex needs and often start talking only to family members, which the patients are quick to notice.

Those with intellectual and developmental disabilities (IDD), comprise 1%-3% of the U.S. population. This diverse group has a broad array of cognitive skills and medical complexity, and are more vulnerable to physical and mental ailments, such as Covid-19, obesity, diabetes, heart disease, addiction, and mental illness. Once admitted, patients face communication barriers that keep them from explaining their symptoms.

The IDD population uses health care at a far higher rate than the general population. Inpatient readmissions or return trips to the ER within 30 days of discharge are also more common for the IDD group, indicating poor quality care or lousy care coordination, or both. All those shortcomings mean that those with IDD don’t live as long as other people.

The NIH’s recognition of those with disabilities as a health disparity population is a landmark decision — one that almost didn’t happen. At first, the NIH working group tasked with recommending whether people with disabilities should receive the health disparities designation did not recommend it. Their concerns included the lack of a standard definition for disability and the fear that the needs of such a large, mixed group could outstrip the financial and staffing resources of the NIH.


The Next Census Could Undercount the Number of Disabled Americans by 20 Million

By Bonnielin Swenor and Scott Landes, STAT News, November 27, 2023

About 20 million disabled people will be erased if the U.S. Census Bureau moves forward with changes to disability data collection methods. That is because many disabled people will no longer be counted as disabled by the new questions the Census is proposing to use starting in 2025 with the annual American Community Survey (ACS).

As disabled people, and as scholars who study disability measurement and use disability data for our research, we have grave concerns about this proposed change. If the Census changes its disability questions it will artificially reduce national estimates of disability almost by half, by the bureau’s own estimate. Any effort to undercount disabled people is alarming as the prevalence of disability is rising, not declining, as a result of the Covid-19 pandemic.

Researchers and policymakers rely heavily on Census data from the decennial Census, as well as from the yearly ACS. Census data are part of informed decisions about federal, state, and local government allocation of resources and are also used to develop evidence-based policies for education, housing, infrastructure, health, support services, and emergency response.

The Census has historically undercounted certain minoritized groups, particularly Black, Hispanic, and American Indian populations. Recognizing the problem that these undercounts present, the Census invests substantial time, energy, and dollars into trying to ensure that they “count everyone.”

Yet the proposed changes to the disability questions, which were initially presented during a Census Scientific Advisory Committee in September 2023, will, as the proposers acknowledge, lead to an undercount of disabled people — the largest minority group in the United States.

The Census currently uses the ACS disability questions, which is the standard set by the Department of Health and Human Services. The ACS disability questions were created to measure disability status among the U.S. population and added to the Census in 2008 in response to concerns from the disability community. Since then, these disability questions have been used across 17 nationally representative surveys and have provided consistent estimates of the disabled population in the U.S. They ask respondents to answer yes or no to whether they have difficulty with six functional tasks (vision, hearing, mobility, cognition, self-care, independent living). Those who answer yes to difficulty with any of these six functional tasks are automatically counted as disabled. Any changes to this approach to counting disability must be considered carefully, as it will undercount disabled people and remove opportunities to examine trends in data over time.

The Census is proposing to use a different set of disability questions, the Washington Group (WG) questions, which were first developed in the early 2000s and are currently used, despite evidence that they undercount the disabled population, in two U.S. surveys: the National Health Interview Survey and the National Nutrition Examination Survey. Instead of asking a straightforward yes or no question, the WG asks respondents to report the level of difficulty they have with the same six functional tasks. The WG then uses a pre-determined cut-point to indicate what level of functional difficulty is considered disabled. Thus, a disabled person who reports having difficulty with one of the six functional tasks included in the WG questions, but at a lower level than the pre-determined cut point assigned by the WG, would not be considered as disabled. In effect, the WG questions allow those who own and use the data to act as gatekeepers for deciding how disabled is disabled enough to be counted.

The WG’s approach to collecting data disability is contradictory to the Census’ goal of counting everyone. The WG explained that when creating their questions: “It was not our purpose to identify every person with a disability within every community.” It is therefore not surprising that multiple studies have found that the WG questions perform worse than the ACS disability questions in counting disabled people. In fact, the Census found similar results during testing of the WG questions that was conducted in 2020-2022 — the WG undercounted disabled people, reducing the estimated size of this population by 42% — from 14% to 8%. If that holds true in the Census, that would mean removing 20 million Americans from the ranks of the disabled. That will result in a drastic slashing of resource allocation for a population that faces profound and unaddressed inequities and health disparities. However, the Census’ plan was to only “communicate” these changes to the disability community after making them, which is far from community engagement.

Continued here, with links to further resources

CMS Details State Spending Plans for Home & Community-Based Services Under American Rescue Plan

CMS Press Office, January 4, 2024

January 4: CMS released state spending plan summaries for section 9817 of the American Rescue Plan Act of 2021 (ARP). The spending plan summaries illustrate how states expect to spend $36.8 billion on activities to enhance, expand, or strengthen home and community-based services (HCBS) under Medicaid. States’ activities focus on workforce recruitment and retention, workforce training, quality improvement, efforts to reduce or eliminate waiting lists, expansions of the use of technology, opportunities to support caregivers, and ways to address social determinants of health and promote equity.

Download the report here

IRS Raises ABLE Account Limit

By Michelle Diament, Disability Scoop, January 8, 2024

With the new year, individuals with disabilities will be allowed to put aside more money than ever before in a special type of account that permits them to save without jeopardizing their government benefits.

The Internal Revenue Service said that the federal gift tax exclusion increased to $18,000 effective at the start of this month. The annual deposit limit for ABLE accounts is tied to that measure, so it will rise as well.

The new limit is up from $17,000 last year thanks to inflation and it reflects a change to the maximum allowable ABLE account contribution that’s similar to what’s been seen in recent years.

ABLE accounts offer people with disabilities the ability to save up to $100,000 without sacrificing eligibility for Social Security and other government benefits. Medicaid can be retained no matter how much is in the accounts.

Funds saved in the special accounts that were established under a 2014 federal law can be used to pay for qualified disability expenses including education, health care, transportation and housing. Interest earned is tax-free.

While ABLE account contributions are generally capped at the gift tax limit, people with disabilities can save more if they are employed and do not contribute to a retirement plan.

Workers with disabilities in the 48 contiguous states can save up to $14,580 in earnings in addition to the gift tax exclusion value for this year, according to the ABLE National Resource Center. Alaska residents can save an extra $18,210 in compensation and $16,770 for those in Hawaii.


State News:

Massachusetts - Healey Announces Spending Cuts as Mass. Tax Revenues Fall Short

By Kinga Borondy, Worcester Telegram & Gazette, January 8, 2024

Six months of disappointing tax revenue has prompted Gov. Maura T. Healey to cut spending for the current fiscal year by $375 million — mostly in funding for MassHealth, social programs and college supports — to help close an anticipated $1 billion budget gap.

Layoffs are not in the picture, state officials say.

The $769 million shortfall in tax collections through the last six months, compared to what had been projected, reflects slower economic growth than anticipated, said Matthew Gorzkowicz, the state’s administration and finance secretary.

The bulk of the cuts, $294 million, target MassHealth, the state's Medicaid and Children's Health Insurance Program.

The cuts will come from reimbursement rates paid to doctors treating patients in the system and are also the result of savings from people enrolled in state-subsidized health insurance using fewer services than expected.

The cuts to MassHealth will not affect eligibility requirements, according to officials.

 Also being cut are services to families and in the mental health field:

  • Commonwealth Care Trust Fund: $50 million
  • Community Residential Services: $35 million
  • Transitional Aid to Families with Dependent Children Grant: $13 million
  • Center-based child care rate increase: $12 million
  • Community Day and Work: $13 million
  • Behavioral Health Supports: $5 million
  • Housing Services and Counseling: $5 million
  • Massachusetts State Scholarship Program: $4 million

Read the full article here

Massachusetts - Gov. Healey Cuts Provider-Run Group Home and Other DDS Spending as Budget Shortfall Looms

By Dave Kassel, The COFAR Blog, January 9, 2024

Faced with $1 billion in declining state revenue projections, Governor Healey yesterday ordered $375 million in spending cuts across the board in state government, including in programs for persons with intellectual and developmental disabilities (I/DD).

No cuts are being made in the line items funding the Wrentham and Hogan Centers or the state-operated group homes.

However, the Community Residential line item (5920-2000) will be cut by $40.4 million, bringing funding under the line item close to even with last year’s funding level. Not only does that amount to a cut when adjusted for inflation, it is occurring in the middle of the current fiscal year.

But DDS Commissioner Jane Ryder said the funds being cut in the Community Residential account are “projected amounts to be reverted anyway due to delays in placements and getting back to services,” according to the Arc of Massachusetts, a key lobbyist for DDS-funded providers. The Arc reported that Ryder promised that, “no (provider) contracts are being amended.”

It does appear, however, that the Community Residential cut could reduce planned increases in wages of direct-care staff in provider-run group homes. According to the Arc, the cut could affect “recruitment of qualified direct support, supervisory, and clinical staff; fringe benefits; and training allowances in our home and community services.”

The Community Day and Work line item (5920-2025) will be cut in the current fiscal year by $13.8 million, and the Autism Division line item (5920-3030) will be cut by $1 million.

The day program cut is also potentially concerning given the ongoing shortage of adequate staffing and meaningful activities in those programs.

Read the full article here

Massachusetts - Family Thanks DDS Commissioner for Referral of Sister to the Wrentham Center

By David Kassel, The COFAR Blog, January 11, 2024

Please read this article here

Note: It is unfortunate that we rarely have the opportunity to share with our readers any stories about placements at State-Operated ICFs, especially in facilities like Wrentham, where the state displays such a strong aversion to providing these vital services to families in need.

Oklahoma - New Incentives Announced for Providers Serving Oklahomans with Disabilities

By Jillian Taylor, KOSU (NPR), January 8, 2024

Oklahoma Human Services (OHS) is working with the Oklahoma Health Care Authority to provide up to $3,000 in incentives to new and existing direct support professionals through its new program DSP+, launching Feb. 1.

These providers serve Oklahomans with developmental disabilities, medically fragile individuals, people with disabilities transitioning into the community from care facilities and aging Oklahomans.

Beth Scrutchins, the division director for OHS’ Developmental Disabilities Services, said these professionals are “at the heart of what we do.” She also said they’re crucial to helping people build skills, engage with their communities and support the families of these individuals.

Currently employed professionals who are working for a participating provider agency on or before Jan. 31 can apply and receive a one-time $1,000 incentive. They can also earn an additional $1,000 every six months they’re employed until January 31, 2025.

New professionals must be hired on or after Feb. 1 and work a full calendar month to receive the one-time $1,000 incentive. They can receive $1,000 every additional six months they’re employed until the next year.

If Oklahomans become direct support professionals at any point during the year, they’re still eligible to participate. But payments will be prorated based on how many months they’ve spent as one of these professionals in the DSP+ program, meaning they might not get the full $3,000 if they apply later.

Participating provider agencies can also receive an incentive based on initial registration numbers through Jan. 31 as long as they also enroll by that date. Those incentives break down like this:

  • Entities with 5 or fewer participants receive $1,000 
  • Entities with 6 to 25 participants receive $2,500 
  • Entities with 26 to 100 participants receive $4,000 
  • Entities with 101 to 250 participants receive $7,000 
  • Entities with 251 or more participants receive $10,000 

Scrutchins said Developmental Disabilities Services [DDS] isn’t sure how many professionals are in Oklahoma. Although it offers a training course in partnership with provider agencies, it doesn’t have the means to keep track of active employment after people complete it. But she said as OHS continues to work through its 13-year DDS waitlist, the need for these professionals has become apparent.

“In general, there's not really a way to pay a direct support professional until they're actually engaged with the individual or family. So, I mean, we're learning as we go about what the need is, but we know we have been experiencing a shortage,” Scrutchins said.

The Legislature appropriated $32.5 million to end the DDS waitlist and increase provider rates in 2022. DDS separated the nearly 5,000 applicants into seven cohorts based on when they joined the waitlist.

The division provides services like caregivers, transportation and job coaches to help Soonercare-eligible Oklahomans with developmental or intellectual disabilities. This issue is common in the U.S., with an average wait time of 67 months for Developmental Disabilities Services applicants.


Connecticut - Nonprofit Providers Make the Case for More Funding

By Hugh McQuaid, CT News Junkie, January 10, 2024

Connecticut nonprofit providers painted a dire picture of their staffing situations Wednesday, as they began to make the case that lawmakers should approve more state funding to support their operations during the legislative session that begins next month.

More than two dozen nonprofit leaders crowded around a group of conference tables in the multipurpose room of Hartford’s NEAT Center at Oak Hill, where they took turns articulating the need for bolstered state funding for the community-based organizations that provide social safety net programs that were once offered by state government. [Emphasis added]

“How do we value these services?” Barry Simon, Oak Hill’s president and CEO, asked the handful of legislators who attended the meeting. “How do we make it so it can be included in the budget, so that it can have increases when inflation goes up, so we’re not scrambling and going 10 years without any increases? We just can’t exist if this is the type of partnership we’re in.”

After years of largely flat funding, state policymakers approved an increase for the providers in the two-year state budget adopted last year. That bump included a 2.5% cost of living raise over the two years as well as an additional $50 million for providers funded by the Department of Developmental Services.   

But that increase fell well below what the Connecticut Community Nonprofit Alliance argued it needed to retain underpaid staff and avoid service disruptions. 

On Wednesday, Gian Carl Casa, the group’s president and CEO, outlined a new funding request, asking the state to allocate $50 million for the providers who did not receive the additional increase in last year’s budget as well as a 5% increase for providers across the board. 

At $186 million, Casa acknowledged the request came with a hefty price tag.   


Advocates Call for Raising the Wage for Direct Support Professionals in New York

By Brianne Roesser, Cityh of Buffalo via Spectrum News, January 11, 2024

Elected officials joined together with the Developmental Disability Alliance of Western New York (DDAWNY) on Thursday to call on Gov. Kathy Hochul to raise the wage for direct support professionals, or DSPs.

Advocates called for a 3.2% cost-of-living adjustment and $4,000 wage raise. Currently, the job pays around $16.02/hr. in Western New York.

Agencies like DDAWNY and People Inc. said there are thousands of jobs unfilled and that two group homes in Western New York have closed due to the current wage.

“We’re asking for funding to keep them coming to work as it has been indicated, and as many of our staff are here to say, they’re working two and three jobs,” said Sandie Brown Maynard, assistant vice president of clinical services at People Inc. “This is not enough. Support them however you can. They support human life.”

Read the full article here

VOR Bill Watch:

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


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

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

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

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

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

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

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

H.R.670 - Think Differently Database Act

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

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

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

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

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

H.R.3380 - HEADs UP Act of 2023

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


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

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

S. 1148 - The Guardianship Bill of Rights

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

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

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


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

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

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

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

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

S.3118 - The HCBS Relief Act of 2023

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

VOR supports increasing funding for people with I/DD, but we have concerns that the above bills, in their current form, would discriminate against people with the most severe I/DD and autism and jeopardize the higher-care facilities that are most appropriate to their needs.

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What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?

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