August 18, 2023

VOR's Weekly News Update

VOR is a national non-profit organization that advocates for

high quality care and human rights for all people with

intellectual and developmental disabilities.

Follow us on Facebook
Watch us On YouTube
Click here to Join, Renew or Donate
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities


Useful Information about Medicaid LTSS

How Many People Use Medicaid Long-Term Services and Supports and How Much Does Medicaid Spend on Those People?

By Priya Chidambaram and Alice Burns, KFF, August 14, 2023

In 2020, KFF estimates that 4.2 million people used Medicaid long-term services and supports (LTSS) delivered in home and community settings and 1.6 million used LTSS delivered in institutional settings (Figure 1). LTSS encompass the broad range of paid and unpaid medical and personal care services that assist with activities of daily living (such as eating, bathing, and dressing) and instrumental activities of daily living (such as preparing meals, managing medication, and housekeeping). They are provided to people who need such services because of aging, chronic illness, or disability and may be provided in institutional settings such as nursing facilities or in people’s homes and the community. Services provided in non-institutional settings are usually referred to as home- and community-based services (HCBS) and include a wide range of services such as adult daycare, home health, personal care, transportation, and supported employment. In 2020, Medicaid was the primary payer for LTSS, covering over half of all LTSS spending in in the U.S. Despite Medicaid’s significant role in funding LTSS in the U.S., eligibility for Medicaid LTSS is complex and varies widely by state. This data note provides an overview of Medicaid coverage of LTSS, KFF estimates of how many Medicaid enrollees used LTSS in 2020, how much Medicaid spent on enrollees who used LTSS, and policy issues to watch in the coming years. Key takeaways include:

  • In 2020, there were 5.6 million people who used Medicaid LTSS, of which 4.0 million (72%) used only HCBS, 1.4 million (24%) used only institutional care, and 0.2 million used both (4%) (Figure 1). The share of people using Medicaid LTSS only in home and community-based settings ranged from 45% in Maine to 94% in North Carolina (Figure 2).
  • Medicaid spending per-person was nearly nine times higher for people who used LTSS than for those who did not use LTSS ($38,769 vs. $4,480), with particularly high spending for people who used institutional LTSS (Figure 4).
  • People who used Medicaid LTSS comprised 6% of Medicaid enrollment but 37% of federal and state Medicaid spending, reflecting the generally high cost of LTSS and more extensive health needs that lead to higher use of other health care services and drugs (Figure 5).

Read the full article here

View related tables here (HCBS)

Protect Your Loved Ones from Medicaid Disenrollment

States have been removing people from their Medicaid roles in large numbers as the end of emergency provisions put in place during the height of the pandemic are set to expire. The Great Unwinding is continuing, and anyone who receives services through Medicaid may be at risk of losing their benefits for failing to file new paperwork with their state agency.

In some states, Medicaid recipients can check their eligibility status online.

VOR encourages its members to contact their state agencies to make sure that the proper forms have been filed, so not to lose coverage.

Please click here to register

National News:

Special Education Teacher Shortage Persists Nationally

By Michelle Diament, Disability Scoop, August 17, 2023

As the school year gets underway, the vast majority of states are reporting a shortage of special education staff, prompting districts to skimp on services and reassign students with disabilities.

Data from the U.S. Department of Education indicates that 42 states and Washington, D.C. have fewer special education teachers than schools need. That’s every state except Arkansas, California, Louisiana, New Hampshire, North Dakota, Oklahoma, Oregon and Utah.

The situation represents an improvement over last year when all but three states had shortages in the specialty at the start of the academic year.

Still, the lack of special educators is taking a toll on students with disabilities, according to Denise Marshall, CEO of The Council of Parent Attorneys and Advocates, or COPAA, a nonprofit that advocates for the rights of students with disabilities and their families.

“While it is unlawful for a school to deny (individualized education program) services contracted for in a child’s IEP, COPAA members are experiencing IEP meetings where a district will seek to keep a certain type of service out of the IEP and/or reduce or limit access/number of minutes/hours to certain specialized services (like) school counseling, speech/occupational therapy,” she said. “Access to qualified staff has much to do with these limitations being placed on IEP services.”

Marshall noted that enrollment in special education nationwide has increased by 800,000 in the last 10 years, increasing demand for special educators. Meanwhile, millions of teachers are expected to retire in the next decade.

Read the full article here

Disability Advocates Urge Supreme Court Not To Limit ADA Protections

By Michelle Diament, Disability Scoop, August 15, 2023

More than a dozen advocacy groups are asking the U.S. Supreme Court to uphold the rights of people with disabilities to sue under the Americans with Disabilities Act.

In a “friend-of-the-court” brief filed this month, 18 disability organizations argue that so-called testers — or individuals with disabilities who actively seek out ADA violations and pursue legal action — are critical to ensuring that the nation’s primary disability rights law is followed.

“Private enforcement is both authorized by the text of the ADA and essential to its effective implementation,” reads the filing from The Arc of the United States, the Disability Rights Education & Defense Fund, the National Disability Rights Network and several other organizations.

The brief comes in a case known as Acheson Hotels, LLC v. Laufer that’s scheduled to go before the high court this fall. Deborah Laufer, a Florida resident who has a vision impairment and uses a cane or wheelchair, sued Acheson Hotels alleging that the website of the Coast Village Inn and Cottages in Wells, Maine did not offer sufficient information about accommodations for people with disabilities as required under the ADA.

The suit was dismissed by a lower court, which found that Laufer was not injured because she had no plans to visit the hotel. The decision was then overturned on appeal with the U.S. Court of Appeals for the First Circuit finding that “Laufer’s feelings of frustration, humiliation and second-class citizenry” were “‘downstream consequences’ and ‘adverse effects’ of the informational injury she experienced.”

Now, the Supreme Court is set to consider whether people with disabilities have standing to sue under the ADA if they have no intention of visiting the business in question.

The issue has gained significant attention in recent years as serial testers like Laufer — who has filed more than 600 federal lawsuits since 2018 making similar allegations against hotel owners and operators — have become more prevalent earning the ire of business groups and lower courts have differed on whether such testers have standing to sue.


VOR is concerned about the ramifications of establishing a precedent that would allow these "testers" to initiate lawsuits against service providers that offer residential and employment opportunities that address the needs of those with more severe/profound I/DD and autism.

State News:

Indiana - Families, Advocates Rally to Stop Proposed Cuts to ABA Therapy that Helps Kids with Autism  

By Lauren Kostiuk, WTHR News, August 17, 2023

With just days left to give feedback on proposed cuts, families of children with autism are sounding the alarm. They say these cuts could decrease access to life-changing care called “Applied Behavioral Analysis.” 

Last week, the Family and Social Service Administration announced a proposed standard Medicaid reimbursement rate for ABA therapy statewide. Providers say it's a cut from $100 an hour to about $55 an hour. 

“It affects everyone, not just our families,” said Jennifer Terrell, whose 4-year-old granddaughter has autism and is nonverbal. “It has been amazing. She can now communicate with us. Before, she was unable to communicate in any way,”

Terrell was one of the dozens of families who protested Thursday outside of the governor’s residence on Meridian Street. She said ABA therapy has allowed her granddaughter to thrive.

The state says it needs to set a standard to control rising costs with ABA therapy, but families fear such a big cut could put clinics out of business with many kids still on waitlists.

“We fought so hard for our daughter to be diagnosed, and we just finally got to get the benefits of that, and to have that taken away would be detrimental,” Rachel Short said.

Her daughter, who is now 7, just started ABA therapy last month. Short is also a registered behavioral therapist who works with several families in central Indiana.

“All the kids that I work with on a daily basis, I would hate to see what would happen to their families if they were to lose the care they so desperately need,” Short said.

However, the FSSA says it’s not sustainable, which is something the governor agreed with on Tuesday. 

"Slow is I think not fair for anyone," Gov. Eric Holcomb said. "This has been going on for months and will continue to for months, and so we'll make sure we get it right. It is absolutely appropriate, and I would say long overdue, that we have some standards set." 

But advocates say it’s about finding the correct standards that don’t put kids at risk.  

Read the full article here

Read more here

Pennsylvania - Intellectual and Developmental Disability Community "Incredibly Disappointed" with Pa. Budget

By Brendan Scanland, Erie News Now, August 16th 2023

Pennsylvania’s budget is signed, checks are being sealed and delivered. For many non-profits and school districts, months of advocacy efforts for a budget increase are finally paying off. However, that’s not the case for everyone.

“The intellectual and developmental disability community is incredibly disappointed with this year's budget,” said Sherri Landis, Executive Director at the ARC of Pennsylvania. 

Landis says a modest $170 million funding increase proposed by Governor Shapiro was not included in the final $45 billion budget. 

“It was an opportunity for the administration and the General Assembly to help a system that is collapsing. We have a workforce issue that is crippling services, and it was missed,” said Landis.  

“If ever there was a year to invest, this was the year with the rainy-day fund, with revenue surpluses,” said Richard Edley, President and CEO of the Rehabilitation and Community Providers Association (RCPA).

Edley says the proposed increase was critical to boost wages for direct support professionals (DSPs), which average about $16 per hour. 

“Agencies won't be able to pay their staff enough to compete with the private sector, so by definition, programs will continue to close,” said Edley. 

4,000 individuals have already lost services and advocates say upwards of 60,000 Pennsylvanians are at risk because there are not enough DSPs to care for them.  

“Supervisors are doing shifts, CEOs doing shifts, and without any increases, it only will go backwards,” said Edley. 

Currently, over 12,000 individuals remain on the waiting list for services and roughly half of them have emergency needs. Many have been granted waivers but still wait for care. 

Landis says there’s been an increase in contracted employees to help fill the gaps providers are facing. 

“I think that's a concern as well in some cases. The people who are providing these services are really desperate and need help and we're seeing that across the board. You worry about the individuals being served and making sure that they have their needs met in a workforce that is quickly put into positions,” said Landis. 

"You have contract workers and overtime and people pulled from other services just to cover a shift at a group home- is it any surprise then you see an increase in things like medication errors? It's not because people are bad, it's just impossible to keep up that kind of quality and service when you're just pulling people all over,” said Edley. 


New York - Group Home Staffing Crisis Forces Woman Into Weekly 120-Mile Trip

By Douglass Dowty, via Disability Scoop, August 15, 2023

Sherry Chayka doesn’t say many words, but she’s clearly comfortable at the Port Byron group home where she’s lived for the past 42 years, her mother said.

Chayka’s home is now shuttered on the weekends due to lack of group home staffing. The state sends Chayka, 59, on a nearly 120-mile journey back and forth each week to a home in Sherill, Oneida County, said her mother, Donna Krueger, of Auburn.

Recently, the state has tried to place her in a home in Liverpool. That has led Chayka to begin biting her arms, leaving teeth marks, Kreuger said.

“I hate it, I don’t want her there,” her 79-year-old mom said. “My back is against the wall.”

Chayka’s ordeal is similar to dozens of Central New York group home residents, whose lives have been upended by a staffing crisis that has left the state scrambling to fill 2,000 open positions.

This year, the state Office for People with Developmental Disabilities (OPWDD) has sharply increased the number of temporary closures among its nearly 1,000 group homes. Closures began in the wake of the COVID-19 pandemic.

In addition to closures, the state said it “occasionally” moves residents from place to place, as in Chayka’s case, “when staffing needs cannot be safely met.”

“OPWDD understands that these temporary changes can be disruptive to people’s lives and we make every effort to prevent them while still maintaining the health and safety of the people we support,” the office said in a statement.

There are now 90 group homes that have temporarily closed since March 2020, including 18 in Central New York. This year started with 57 closures statewide and 10 in Central New York.

The state currently operates 889 group homes with 5,563 residents.

In addition to state homes, nonprofits also run 5,796 group homes for people with developmental disabilities across the state. Of the nonprofit group homes, 44 have shut down since March 2020, according to state figures. In Central New York, there are 277 nonprofit group homes. Five have closed since the pandemic.

To help retain workers and recruit new ones, the state has committed $1.2 billion to pay bonuses of up to $3,000 for frontline health workers, including group home caregivers. There are also new training and recruitment efforts, including an effort to train new workers through Access CNY and Onondaga Community College.

“The system is really in a desperate place,” said state Sen. John Mannion, D-Geddes, who chairs the Senate’s Committee on Disabilities.

Historically, wages for entry-level group home workers has hovered around minimum wage, Mannion said. Recent changes have bumped state salaries to roughly $18 an hour to start, he said. There have also been cost-of-living raises in the past three years ranging from 1% to 5.4% each year.

Group home workers still say that the stress and burnout of working in a challenging field has led them to leave for jobs in retail or fast food, which pay comparable rates, Mannion said. He’s advocating for additional payments to workers in the thousands of dollars per year range, as well as a $5,000 tax credit for people working in the industry.

“It really comes from a lack of investment in the system over the course of a decade,” Mannion said. “We need individuals who are highly trained, caring and compassionate and drawn into this type of work.”

Read the full article here

North Carolina - More People with Disabilities in NC Wait for Services while a Court Fight Continues

By Lynn Bonner, NC Newsline, August 14, 2023

It’s the dilemma at the center of the frustration and worry for people with disabilities and their families in North Carolina. People with intellectual or developmental disabilities wait years for services that help them live in communities rather than institutions. The wait list has grown to 17,000 people.

There’s not enough money for all of them, but the regional mental health offices that approve the services and authorize payments don’t spend all the money they have. There’s a shortage of workers who provide people with disabilities the assistance they need to live outside institutions. People willing to take on challenging jobs that come with low hourly pay that falls short of a living wage are scarce. 

Low pay for support workers and the growing waiting list have been debated for years. 

“Y’all have been waiting for a really long time,” Kody Kinsley, state Department of Health and Human Services secretary, said at a town hall meeting of the NC Council on Developmental Disabilities last week. “We’re far beyond the point of crisis. And we’ve seen this coming.”

Court ordered action

The nonprofit advocacy group Disability Rights North Carolina won a lawsuit last year centered on the lack of community services. A trial court ordered the state to eliminate over 10 years the waiting for a special Medicaid program that provides community services for people with disabilities. The state appealed, and the two sides are about to enter mediation.  

A special Medicaid program called the Innovations Waiver helps people with intellectual or developmental disabilities pay for services in the community. The state and federal governments pay the cost, with the federal government picking up most of the tab. The state agrees to pay for a certain number of “slots,” or funded waiver recipients. 

Judge Allen Baddour’s landmark ruling last year in what’s known as the Samantha R. case required the state to eliminate the waiting list by July 1, 2032, and to find ways to move people out of institutions or to keep them from going into them in the first place. 

In a February hearing, Baddour chided DHHS for saying for years it needed to plan, but failing to outline definitive actions. 

After Baddour’s November order calling for more community services and an end to the waitlist, DHHS devised a detailed multi-year plan to increase Innovations Waiver slots, increase wages for direct care workers, and establish an online certificate program for workers that would be linked to higher provider rates beginning in 2025. These steps would depend on state funding. 

Under the DHHS plan, the regional government mental health offices that manage the Innovations Waiver money would be expected to set goals for authorizing services and would have to report their performance on online dashboards.

Budget solutions remain elusive

The proposed budget Gov. Roy Cooper released in mid-March included money for 1,000 additional slots and funds to support pay raises that would bring direct care worker wages to $18 an hour. His budget also suggested adding thousands of slots over the next 10 years. 

While Cooper’s budget signaled a desire to add more slots, state budgets cover only two years. The legislature appropriates money and typically ignores the spending proposals governors submit. 

The Senate budget proposal added 350 waiver slots. The House budget proposed to pay for an added 250 slots. Each chamber’s budget had money to increase wages of direct care workers by an average of $6.50 per hour above the state’s industry average. 

Baddour’s order said that after Jan. 1, 2028, no more people should move into institutions, but said none would be required to close.

Read the full article here

Back Issues of VOR's Weekly Newsletter are available on our web site.

Please Click 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.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.

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.

Please share this offer with your loved one's

Direct Support Professionals!



Our loved ones' caregivers are essential to their health, safety, and happiness.

In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to receive our newsletter.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at

[email protected]

with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

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

What's Happening In Your Community?

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

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

Is there legislation in your state house that needs attention?

Contact us at [email protected]

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

Toll Free: 877-399-4867 Fax: 877-866-8377
Facebook  Twitter  Youtube  
FACEBOOK: /VOR ----- TWITTER: @VOR_NET ----- YouTube