Medicaid Cuts and Home Care

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.  Home and Community-Based Services (HCBS) are particularly important. 

 O. Rose Broderick at STAT:

Thousands of family caregivers of people with intellectual and development disabilities in Maryland are facing a grim future after the Maryland Department of Health’s Developmental Disabilities Administration proposed steep cuts to their wages earlier this summer. Some caregivers are looking at $20 per hour pay cuts. The new wage tables were slated to go into effect July 1, but pushback from disability advocates delayed the changes to October. They say the cuts will force families to make an impossible choice between going bankrupt and institutionalizing their loved ones in facilities that often face higher rates of abuse and neglect.
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Maryland is not an isolated case. Idaho, Indiana, Missouri and Colorado have all introduced proposals in 2026 that would dramatically slash pay for family caregivers and community care. Ohio legislators even proposed banning family members from being certified caregivers before ultimately dropping the measure. These states’ moves are a sign of the deadline looming over state health departments as the $1 trillion Medicaid funding cut tucked in the 2025 GOP-backed tax bill goes into effect Jan. 1, 2027.

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“We know from the past that whenever the federal government reduces Medicaid, almost every state has made cuts to home and community-based services, and that those optional services include paying family caregivers,” said Kim Musheno, senior director of Medicaid policy at The Arc, a national nonprofit that advocates for people with developmental and intellectual disabilities.

Soon after President Trump started his second term and discussed cutting Medicaid funds, disability advocates raised the alarm that home and community-based services probably would feel the brunt of those cuts, since the care is not mandatory. Since then, the Trump administration has targeted family caregivers, with health secretary Robert F. Kennedy Jr. saying in April that Medicaid-funded programs that pay family caregivers are “rife with fraud” and that those caregivers are doing tasks they used to do for free.

Kemp and Waitlist for Disability Services

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.  Home and Community-Based Services (HCBS) are particularly important. 

Autism Speaks:

Autism Speaks is urging action after Governor Brian Kemp directed the state agency to implement only a fraction of the waiver expansion approved by the legislature, limiting progress on Georgia’s growing waitlist for disability services.

More than 8,000 Georgians with autism or other intellectual or developmental disabilities (I/DD) are waiting for home- and community-based services (HCBS), which help people live at home, access therapies, build skills, and participate fully in their communities. This year, following strong advocacy from families and individuals across the state, the legislature approved a budget allowing 900 individuals to move off the wait list for services. However, Governor Kemp is directing the state agency to use funds for just 100.

“For individuals with autism, access to home- and community-based services is a lifeline,” said David Sitcovsky, Vice President of Advocacy for Autism Speaks. “The legislature put forward a plan to begin addressing the waitlist for these services, but the Governor’s decision to scale back support will have lasting consequences for families across Georgia.”

Medicaid waiver programs such as Georgia’s NOW/COMP waivers are the primary pathway for individuals with autism to access essential services, including behavioral therapies, daily living supports, employment services, and respite care for families. These community-based services can also help prevent more costly outcomes, including crisis response, institutional care, emergency treatment, and caregiver burnout.

Autism Speaks is grateful to Senator Blake Tillery, Senator Ben Watson, Rep. Matt Hatchett, and Rep. Katie Dempsey for championing additional waiver slots in this year’s budget. We are committed to supporting their continued leadership and urge state leaders to build on the legislature’s proposal by identifying opportunities to increase waiver capacity before the next full budget cycle and making this a top priority in the next legislative session.

The state has identified 1,217 individuals who are in critical need of a waiver, and a recent statewide study showed that increases of up to 2,400 slots for three years would be needed to fully address and keep up with demonstrated need. “The Georgia legislature has already recognized both the scale of the need and a path forward,” Sitcovsky added. “It is critical that leaders act with urgency to build on that foundation so fewer families are left waiting year after year for services they urgently need.”

While Governor Kemp’s directive represents a setback, Autism Speaks remains committed to working with state leaders to ensure that Georgia makes meaningful progress toward reducing its waiver wait list. We stand united with other advocates to elevate this issue and invite Georgians affected by autism to join us in this work by

sharing how Medicaid services impact them.

RFK Jr. v. HCBS

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.  Home and Community-Based Services (HCBS) are particularly important. 

 Mike Hixenbaugh at NBC:

Health and Human Services Secretary Robert F. Kennedy Jr. sparked outrage among disability rights advocates with recent comments alleging widespread fraud in Medicaid programs that pay people to care for elderly or disabled family members — a system millions of Americans rely on to survive.

During testimony before the U.S. House Ways and Means Committee last week, Kennedy criticized Medicaid-funded programs that pay relatives to serve as caregivers, alleging they compensate people for tasks they “used to do as family members for free.” That includes paying them “for balancing the checkbook, for picking up the groceries, for driving somebody to a doctor’s appointment,” he said.

“And this is rife with fraud,” Kennedy said, because the federal government has no way “to determine if they actually performed that duty or not.”

Video of the remarks quickly spread across social media, drawing a wave of angry responses from caregivers and disability rights advocates who said Kennedy trivialized the reality of caring for medically complex loved ones while conflating legitimate caregiving with illegal activity.

“That’s insulting,” said Kim Musheno, senior director of Medicaid policy at The Arc of the United States, a national disability rights organization. “It’s insulting to the families, and it’s insulting to the work that direct support professionals do for people.”

That work, advocates say, is far more complex than shuttling loved ones to doctor appointments.

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More than 11 million Americans are paid through government programs to care for elderly or disabled family members, according to a recent study. Many are reimbursed through a suite of state-administered Medicaid programs known as home- and community-based services, which compensate both family members and professional caregivers to help people live safely at home.

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[C]aregivers say Kennedy’s comments paint with too broad a brush and risk undermining services that millions depend on. Advocates also dispute the claim that there are no checks to ensure family caregivers are legitimate, noting that states typically require training, documentation of care and other oversight.

Medicaid home-care programs are already under strain. More than 600,000 disabled or elderly people are estimated to be on waitlists for services nationwide, and advocates say low pay and difficult working conditions have led to a chronic shortage of home-care workers.

In response to these pressures, which were amplified during the Covid pandemic, many states have expanded programs allowing family members to be paid caregivers — a shift backed by both Republicans and Democrats. In many parts of the country, especially rural areas, families say they cannot find workers with the skills to care for people with complex medical needs.

Medicaid Cuts and People with Disabilities

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.  Home and Community-Based Services (HCBS) are particularly important. Congress has voted to slash Medicaid.

Maggie Astor at NYT:

Federal law deems most home- and community-based services as optional, so they are often targeted when states have to tighten their belts. When temporary Great Recession increases in Medicaid funding expired in the early 2010s, for example, every state reduced home care by limiting enrollment or lowering spending on existing recipients.

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Health care experts anticipate cuts to home- and community-based care in some states because the new law limits provider taxes. Almost every state taxes hospitals, then uses the revenue to pay the hospitals for treating Medicaid patients. That increases Medicaid spending on paper and triggers more federal matching funds, which states use to cover various Medicaid services.

The 22 affected states where provider taxes are higher than the new law’s cap — 3.5 percent of net patient revenue — will lose federal money. The White House argued that this would not affect home- and community-based care because states could make up the difference by paying hospitals less for Medicaid services, reducing the rates to match those of its sister program, Medicare.

Experts said the White House’s argument was unrealistic. Not all states pay higher prices for Medicaid than for Medicare, and even for those that do, the numbers don’t add up, Dr. [Benjamin] Sommers said. Many states will have to find money somewhere else, too, and each state will have to choose whether that somewhere is home- and community-based care or another part of their budget.

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Reductions could come in several forms. States could place further restrictions on who qualifies for coverage, cover fewer hours of care or lower pay for home health workers. Or they could eliminate waiver programs altogether. Even at existing funding levels, hundreds of thousands of people are on waiting lists for waivers, and those lines could get longer.

Medicaid Cuts and HCBS

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.  Home and Community-Based Services (HCBS) are particularly important. Congress has voted  to slash Medicaid.

Dr. Zachary Rossetti at The Fulcrum:

Mandatory services, which are required by law, consist of healthcare services like doctor visits, medical care in hospitals, and long-term services and supports that are provided in nursing homes or institutions. Non-mandatory services, which are optional and vary by state, consist of dental care, some therapies, and most home- and community-based services (HCBS) provided through Medicaid waiver programs.

Many non-mandatory services are lifelines to individuals with IDD and autism to remain in their communities, allowing them to live safely and with dignity in their own homes and to engage meaningfully in lives of their choosing. Although they are labeled “non-mandatory,” these supports are absolutely critical for people with IDD and their families. Yet, because they are optional, non-mandatory services are most likely to be affected by any cuts to Medicaid. Mandatory services, meanwhile, are required by law and thus less likely to be affected by cuts to Medicaid. As a result, families may have no other options besides institutional care.

Additionally, many individuals with IDD and autism gained access to healthcare through the Affordable Care Act’s option for states to expand Medicaid coverage. But proposed cuts to Medicaid in the reconciliation bill would be more likely to affect those with Medicaid expansion coverage because the federal government covers 90% of costs for Medicaid expansion compared to 50% for traditional Medicaid. This would hit especially hard in states like Massachusetts where long waitlists already limit access to home- and community-based care.

Nationally, the best available data indicate over 700,000 people across 38 states are on waiting lists for home- and community-based care. Any cuts to Medicaid would mean that even fewer people with IDD and autism receive the services they need.

Work Reporting Requirements

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.  Home and Community-Based Services (HCBS) are particularly important. Congress is about to slash Medicaid.

Bram Sable-Smith at KFF:

Republicans have touted Medicaid work requirements both as a way to reduce federal spending on the program and as a moral imperative for Americans.

“Go out there. Do entry-level jobs. Get into the workforce. Prove that you matter. Get agency into your own life,” Mehmet Oz, administrator of the Centers for Medicare & Medicaid Services, said in a recent interview on Fox Business.

Democrats, meanwhile, have cast the requirements as bureaucratic red tape that won’t meaningfully increase employment but will cause eligible people to lose their health insurance because of administrative hurdles.

Indeed, the vast majority of Americans enrolled in Medicaid expansion are already working, caregiving, attending school, or have a disability, according to an analysis by KFF, a health information nonprofit that includes KFF Health News.

And while the Congressional Budget Office estimates the work requirement included in the House bill would cause 4.8 million Americans to lose their insurance, only about 300,000 of those people are unemployed because of lack of interest in working, according to the Urban Institute, a nonprofit research group. Recent history in states that have tried work requirements suggests technical and paperwork problems have caused a substantial portion of coverage losses.

Kim Gallagher had to give up guardianship of her son so she could receive pay for being his caregiver.

Gallagher worries about her coverage, because she recently was diagnosed with Hashimoto’s disease, an autoimmune disorder that attacks the thyroid gland. She said she had to search for her Medicaid card to fill the prescription that followed, having barely used it in the year in a half she’s been covered.

She also worries about her son’s Medicaid. A nursing home is not a realistic option, considering his needs. His coverage doubles as Gallagher’s only source of income and also pays for other caregivers, when she can find them, who give her breaks to tend to her own health and to her aging parents.

But nearly all in-home services like those Daniel receives are optional programs that states are not required to include in their Medicaid programs. And the magnitude of the cuts being proposed have prompted fears that the optional programs could be chopped.

“It would destroy our lives,” Gallagher said. “The only income we would have would be Daniel’s Social Security.”

Medicaid Cuts

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.  Home and Community-Based Services (HCBS) are particularly important. Congress is about to slash Medicaid spending.

Dr. Zachary Rossetti at The Fulcrum:

To understand the devastating impact of these Medicaid cuts on people with IDD, including those with autism, it’s crucial to recognize the distinction between mandatory and non-mandatory Medicaid services.

Mandatory services, which are required by law, consist of healthcare services like doctor visits, medical care in hospitals, and long-term services and supports that are provided in nursing homes or institutions. Non-mandatory services, which are optional and vary by state, consist of dental care, some therapies, and most home- and community-based services (HCBS) provided through Medicaid waiver programs.

Many non-mandatory services are lifelines to individuals with IDD and autism to remain in their communities, allowing them to live safely and with dignity in their own homes and to engage meaningfully in lives of their choosing. Although they are labeled “non-mandatory,” these supports are absolutely critical for people with IDD and their families. Yet, because they are optional, non-mandatory services are most likely to be affected by any cuts to Medicaid. Mandatory services, meanwhile, are required by law and thus less likely to be affected by cuts to Medicaid. As a result, families may have no other options besides institutional care.

Additionally, many individuals with IDD and autism gained access to healthcare through the Affordable Care Act’s option for states to expand Medicaid coverage. But proposed cuts to Medicaid in the reconciliation bill would be more likely to affect those with Medicaid expansion coverage because the federal government covers 90% of costs for Medicaid expansion compared to 50% for traditional Medicaid. This would hit especially hard in states like Massachusetts where long waitlists already limit access to home- and community-based care.

Nationally, the best available data indicate over 700,000 people across 38 states are on waiting lists for home- and community-based care. Any cuts to Medicaid would mean that even fewer people with IDD and autism receive the services they need.

Autism and Medicaid

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.  The House has voted to make it harder to get Medicaid.

From the Policy Impact Project at Drexel:

1.In 2020, nearly 1.6 million autistic people were enrolled in Medicaid services nationwide. Approximately one-third had a co-occurring intellectual disability. 

2.About 57% of autistic people qualify for Medicaid based on their disability. 

3.More autistic Medicaid enrollees are children versus adults. Over 65% were under the age of 18 years. 

4.Autistic people who use Medicaid live in rural areas as well as urban. Nearly 16% live in large or small rural towns. 

5.Only about 21% of autistic people, or roughly 332,000 people, have spots in Medicaid Home and Community BasedServices (HCBS) waivers in their state, also known as 1915c waivers. 

Medicaid Cuts

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

Lisa Poteat at The Carolina Journal:

The US House Budget Committee recently proposed, on Page 30 of their budget resolution, a per capita cap for Medicaid for each state. These caps would most likely not get North Carolina the funding needed for all Medicaid recipients and programs.

Medicaid is key to people with IDD living productive lives in the community of their choice. A loss of funding to this program would not only upend the lives of people with IDD and their families, but it would also harm North Carolina’s economy.

If a person with IDD loses access to supports and services due to cuts in the Medicaid program, some of the ripple effects include:

Employment: Many people with IDD are employed. A loss of funds could close supported-employment programs. It could also mean funding isn’t available to pay for the DSPs. If a DSP is not able to help, parent(s) may have to quit their jobs to stay home full time to take care of their child. All these scenarios result in a negative compounding effect in economic losses.

Increase to NC Innovations Waiver waitlist: North Carolina already limits HCBS due to constraints on available funding, with 18,771 people with IDD are currently on a waitlist to receive Medicaid-funded HCBS.

State budget: State legislators would have to look at making up for the loss in federal funds.

Shutdown of rural hospitals: Many people with IDD living in rural parts of North Carolina need access to rural hospitals for emergency care. Medicaid funding enables rural hospitals and other critical health care infrastructure to stay open and provide care.

Community based organizations: Organizations providing HCBS may have to furlough staff due to cuts in HCBS funding.

Loss of independence: Without supports in place, people with IDD may be forced to move into an institution and out of their community.

HCBS Is In Danger

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

Julia Metraux at Mother Jones:

Advocates are worried about the fate of HCBS, which would be relatively easy for states to abandon under the new administration—and which helps millions of people stay out of hospitals, nursing homes, and group homes, which McLelland says frequently deliver “lower-quality care, often at a higher cost.”

The GOP has put forth several proposals promoting Medicaid per-capita spending, which would change current spending practices by limiting funds through a formula that doesn’t take into consideration the needs of disabled people. Nicole Jorwic, Caring Across Generations‘ chief of advocacy and campaigns, said that what such changes “would ultimately do is cut the amount of money that the federal government is sending to states per person…just on the consumer price index.”

Changes to Medicaid per-capita spending, Jorwic says, “means waiting lists would grow” and that “the types of services being offered are going to narrow” as funding is reduced or withdrawn. Given that federal Medicaid funds already make up, on average, one-third of state budgets, Jorwic believes that state governments coughing up the extra cost “is never going to happen.” She notes that health funding is a popular target even in blue states like Maryland, where a $3 billion state funding shortfall has put hundreds of millions of dollars in funding for its human services department funds—where Medicaid is housed—on the chopping block.

Another attack on Medicaid incorporated into Project 2025 has involved lifetime caps on the support of people on Medicaid—caps that many disabled people may hit at a young age. “A state will have to take up the rest of that spending,” said Ives-Rublee, “or they will reduce the coverage of an individual, either by saying we won’t cover these services or by saying we won’t cover you at all.”

Target: Medicaid

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.

Stephanie Armour at KFF:

While Trump has vowed to protect Medicare and said he supports funding home care benefits, he’s been less specific about his intentions for Medicaid, which provides coverage to lower-income and disabled people. Some health analysts expect the program will be especially vulnerable to spending cuts, which could help finance the extension of tax breaks that expire at the end of next year.

Possible changes include the imposition of work requirements on beneficiaries in some states. The administration and Republicans in Congress could also try to revamp the way Medicaid is funded. Now, the federal government pays states a variable percentage of program costs. Conservatives have long sought to cap the federal allotments to states, which critics say would lead to draconian cuts.

“Medicaid will be a big target in a Trump administration,” said Larry Levitt, executive vice president for health policy at KFF, a health information nonprofit that includes KFF Health News.

Ted Kennedy Jr. recently wrote of the first Trump administration:

The administration proposed shifting more Medicaid costs to the states, which would have reduced funding for home and community-based services. Nearly 15 million people with disabilities, who rely on Medicaid for personal caregivers, would have faced a financially forced transfer to institutional care.

 

Waiting in Texas

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

Faith Braverman at KPRC-TV:

The Handley family proposed a bill in the last Texas legislative session that would require school districts to refer students with disabilities to their Local Intellectual and Developmental Disability Authority (LIDDA) the moment they are diagnosed.

Doing so would ensure families are notified about Medicaid Waiver Programs and the services and support available to special needs families at the time of a child’s diagnosis, and for more waiver slots to open up so families can get the help they need.

Carey Nelson Handley and her husband Boyd said they were not aware of the lists until their daughter Caytlin was 14-years-old. She is still waiting for services at age 30.

“We want families to be knowledgeable about what services and supports are available to their children with special needs as they go through life. The Handley bill was started because we have actually been on what’s called the Medicaid waiver Interest Lists for 16 and a half years,” Handley said.

Medicaid home and community-based services (HCBS) provide opportunities for people to receive cost-effective, long-term services and supports in their own home, rather than in an institutional setting, allowing them to live and work in their community.

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Most of these programs have a 15 to 20 year waiting list, and the Handley family have been working with non-profit group The Arc of Texas to address this issue.

According to the Kaiser Family Foundation, Texas is one of six states that don’t pre-qualify people before adding them to the lists, which causes a huge disparity in the waiting times for services.

Handley believes there’s a push for institutionalization in Texas, rather than supporting families who choose to keep their loved ones at home.

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The Handley Law Office is dedicated to making sure other special needs families have the resources to know what they legally need to do to take care of their loved ones, now and in the future. This dedication was taken all the way to the Texas State Capitol building, where the Handley’s testified for House Bill 4716, also known as “the Handley bill.”

Disabilities and the End of Chevron Deference

Uncertainty and complexity are major themes of The Politics of Autism.

ASAN:

The Autistic Self Advocacy Network (ASAN) condemns the United States Supreme Court ruling on two combined cases, Loper Bright Enterprises v. Raimondo and Relentless v. Department of Commerce. The decision overturns a decades-old legal principle known as the Chevron Doctrine, which gives federal agencies the authority to reasonably interpret ambiguous laws when they create federal regulations. These regulations are made legally binding through a rulemaking process that is shaped by the public servants within federal agencies, the input of subject area experts across fields, and anyone who chooses to share their opinion. Instead, federal courts will now have the final say in circumstances where knowledge of highly specialized, complex, and technical issues is required. This ruling will weaken the regulatory authority of all federal agencies, including the Departments of Labor (DOL), Education (ED), Health and Human Services (HHS), the Social Security Administration (SSA), the Environmental Protection Agency (EPA), and the Food and Drug Administration (FDA).

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This decision invites challenges to the forty years of legal precedents relying on Chevron. While these cases and the existing Code of Federal Regulations are not automatically overturned by Loper and Relentless, many will be challenged in the months and years to come. Future regulations are also under threat. Agencies may be less ambitious in fulfilling their mandates, protecting the public, and using taxpayers’ resources well in the face of increased risk that courts will undo their work. The endangered regulations include the Home and Community Based Services (HCBS) Settings Rule, the final rule implementing Section 504 of the Rehabilitation Act, the final rule implementing Title IX of the Education Amendments, and the final rule regarding section 1557 of the Affordable Care Act (ACA).

Olmstead at 25

In The Politics of Autism, I discuss court cases involving the civil rights of people with autism and other disabilities. 

At STAT, Timmy Broderick writes about the 25th anniversary of the Olmstead decision.

Prolonged, involuntary stays in institutions used to be the norm for people with disabilities, as books like “One Flew Over The Cuckoo’s Nest” have portrayed. But after two Georgia women with mental illness and developmental disabilities sued to leave a state hospital, the Supreme Court decreed in 1999 that siloing people with disabilities in hospitals was discriminatory and a violation of the Americans with Disabilities Act.

This landmark ruling, known as the Olmstead decision, augured a shift away from institutional care for long-term services and towards the most integrated setting possible — treating people with disabilities not as outcasts but as community members who can make choices and decide their own futures. The name refers to the main defendant, Tommy Olmstead, the commissioner of the Georgia Department of Human Resources at the time. Some experts refer to it as the Brown v. Board of Education for people with disabilities because of its dramatic expansion of civil rights in the face of forced segregation and a rejection of “separate but equal” institutions.

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Twenty-five years after the Olmstead decision, home and community-based services (HCBS) is the norm rather than the exception for Medicaid recipients. National Medicaid spending on HCBS routinely exceeds spending on institutional services, and nearly 10 million people received some form of HCBS in 2019. Most states now have “Olmstead plans” that sketch out how to further grow community care, too.

But those gains are unevenly distributed, and disability advocates have had to sue several states to ensure their compliance.

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Twenty-five years after the Olmstead decision, home and community-based services (HCBS) is the norm rather than the exception for Medicaid recipients. National Medicaid spending on HCBS routinely exceeds spending on institutional services, and nearly 10 million people received some form of HCBS in 2019. Most states now have “Olmstead plans” that sketch out how to further grow community care, too.

But those gains are unevenly distributed, and disability advocates have had to sue several states to ensure their compliance.

Access to Home and Community-Based Services

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

From HHS:

“Ensuring Access to Medicaid Services” (“Access Rule”) creates historic national standards that will allow people enrolled in Medicaid and the Children’s Health Insurance Program (CHIP) to better access care when they need it and also strengthens home and community-based services (HCBS), which millions of older adults and people with disabilities rely upon to live in the community. This landmark final rule will set minimum threshold standards for payments to the direct care workforce, create meaningful engagement with Medicaid consumers, and advance provider rate transparency.
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The Access Rule strengthens HCBS by requiring that at least 80 percent of Medicaid HCBS payments directly compensate direct care workers rather than cover “administrative overhead.” The rule also requires states to report how they establish and maintain HCBS wait lists, assess wait times, and report on quality measures. This policy would allow states to take into account small providers and providers in rural areas, promote training and quality, and ensure smooth implementation with additional data collection prior to full phase-in.

It protects the health and safety of people who receive HCBS by improving states’ incident management systems and requires states to have a grievance process for all HCBS participants.

See here for a full description of the final rule and a link to the rule text. 

Influence of Public Policy on Diagnosis and Services

In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

Lindly, O.J., Abate, D.J., Park, H.J. et al. The Influence of Policy on Early Diagnosis and Other Autism Services: a Narrative Review. Rev J Autism Dev Disord (2024). https://doi.org/10.1007/s40489-023-00423-0

Abstract

Little is known about how policy—laws, regulations, procedures, administrative actions, incentives, or voluntary practices of governments or other institutions—shapes access to early autism services including diagnosis before age three. Early diagnosis and treatment are considered critical to improve outcomes. Understanding how policy influences such services could have substantial impact on outcomes for autistic children. We conducted a narrative literature review to determine what is known on how policy impacts early autism diagnosis and treatment. We found 17 articles that describe policy factors promoting early diagnosis and seven articles that identify policy factors affecting variability in autism services. We identified the following themes: (1) state policy factors influence access to diagnosis and other autism services, (2) innovative screening models affect early diagnosis, (3) provider training programs increase autism screening and diagnosis, (4) insurance policy influences autism services variability, and (5) resource availability affects geographic variability in autism services. Although common themes exist, more robust investigation is needed on policy impacting early autism services—beyond insurance and early intervention—and utilizing more rigorous designs.

From the article:

The five articles included in this theme were either about state autism insurance mandates (Baller et al., 2016; Callaghan & Sylvester, 2019; Douglas et al., 2017; Mandell et al., 2016) or state Medicaid HCBS waivers focused on children with autism (Velott et al., 2016). Since 2001, states began to require through law that private insurance plans provide coverage for autism services such as ABA therapy (Callaghan & Sylvester, 2019). As of 2017, 46 states and the District of Columbia have implemented at least one such autism insurance mandate (Callaghan & Sylvester, 2019). Similarly, state Medicaid HCBS waivers that cover non-institutional autism services for children with a diagnosis have been in existence since 1981 and have been increasingly enacted by states (Velott et al., 2016). The content (e.g., autism insurance mandates requiring insurance plans to offer autism coverage versus cover autism services, Medicaid HCBS waivers with different enrollment and cost limits) and the implementation of these laws varies widely across states due to several factors such as whether the state has an extensive offering of autism-related services in place and if additional credentialing is required by private insurance plans (Baller et al., 2016; Douglas et al., 2017; Velott et al., 2016). Furthermore, other state contextual factors such as Democratic control, more liberal citizen ideology, percent of uninsured individuals, and percent of employer sponsored insured individuals may affect whether the state has an autism insurance mandate (Callaghan & Sylvester, 2019). Callaghan and Sylvester (2019) found that states had the highest level of Democratic control when members of the Democratic Party controlled the governor’s office and held the majority in each chamber of the state’s legislature. Increased Democratic control was found to be associated with both an increased likelihood to pass autism insurance mandates and increased generosity of the autism insurance mandates. Regardless, states with an autism insurance mandate have a higher treated prevalence of autism among children with private insurance, suggesting that state autism insurance mandates improve service access overall (Mandell et al., 2016).

 

Waiting for HCBS

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

At KFF, Alice Burns, Maiss Mohamed, and Molly O’Malley Watts have a report titled "A Look at Waiting Lists for Medicaid Home- and Community-Based Services from 2016 to 2023."

In 2023, people on the waiting or interest lists waited an average of 36 months to receive HCBS waiver services (27 of 38 states responding), down from 45 months in 2021. People with I/DD waited the longest for services, 50 months on average. The average waiting period for other waiver populations ranged from 5 months for waivers targeting seniors to 37 months for waivers that serve people with autism. People with I/DD residing in states that do not screen for eligibility wait longer for services than people with I/DD residing in states that do screen for waiver eligibility (61 months versus 45 months, on average).

Home and Community-Based Services Relief Act

 The Politics of Autism includes an extensive discussion of insurance and Medicaid services.

A release from Senator Bob Casey (D-PA):

Today, U.S. Senator Bob Casey (D-PA), Chairman of the U.S. Senate Special Committee on Aging, led a group of 17 of his Democratic colleagues in introducing the Home and Community-Based Services (HCBS) Relief Act, legislation to provide much-needed support to state programs that fund home and community-based long-term care services. Currently, staffing shortages at direct care providers have led to a reduction in HCBS availability, despite growing demand. The HCBS Relief Act would provide dedicated Medicaid funds to states for two years to stabilize their HCBS service delivery networks, recruit and retain HCBS direct care workers, and meet the long-term service and support needs of people eligible for Medicaid home and community-based services.

“A vast majority of seniors and people with disabilities would prefer to receive care at home or in their communities,” said Chairman Casey. “Unfortunately, because of our Nation’s caregiving crisis, home and community-based care has become increasingly difficult to access. By stabilizing and investing in the caregiving workforce, we can better provide seniors and people with disabilities with a real and significant choice to receive care in the setting of their choosing.”

More than 90% of those eligible for Medicaid long-term services and supports wish to receive those services in their homes. However, HCBS providers are struggling to meet the demand for their services due to extreme difficulty retaining staff and filling new vacancies. Under the HCBS Relief Act, States would receive a 10-point increase in the federal match (FMAP) for Medicaid for two fiscal years to enhance HCBS. Funds could be used to increase direct care worker pay, provide benefits such as paid family leave or sick leave, and pay for transportation expenses to and from the homes of those being served. The additional funds also can be used to support family caregivers, pay for recruitment and training of additional direct care workers, and pay for technology to facilitate services.

Chairman Casey has a long record of advocating for increased federal support for state-funded home and community-based long-term care services. In January 2023, Chairman Casey introduced the Better Care Better Jobs Act, with 41 co-sponsors, to enhance Medicaid funding for home care services for older adults, people with disabilities, and injured workers to help many of the over 650,000 people on waiting lists nationally finally receive care in the setting of their choice; increase payment rates to promote recruitment and retention of direct care workers, increase wages, and develop and update training opportunities; and provide support to the Centers for Medicare & Medicaid Services to conduct oversight and encourage innovation to benefit direct care workers and care recipients.

In March, Chairman Casey held a hearing to examine the economic benefit of investing in Medicaid home and community-based services (HCBS) as millions of older adults and people with disabilities nationwide rely on caregivers to provide everyday services like help with bathing, eating, and managing medications despite caregivers earning a median wage of roughly $14 per hour and often living in poverty. During the hearing, Casey introduced the HCBS Access Act to address lengthy waiting lists, that sometimes last years and even decades, for home care services as the majority of older adults and people with disabilities contend with being forced to live in an institutional setting to access the services they need due to long wait lists, despite a preference for receiving care at home.

Read more about the Home and Community-Based Services (HCBS) Relief Act here.