October 9, 2023

VOR's Weekly News Update

Part 2

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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Last Week's Newsletter (and Today's)

There was a lot to sort through last week. We covered the issues involving 14(c) prrgrams and employment issues on Friday. This newsletter covers some of the challenges facing residential services.

There are a range of subjects, covering the need to re-open ICFs to new applicants, laws in at-home care, prooblems in group homes, closures of programs.

Amy S. F. Lutz's New Book Dropped This Week.

Chasing the Intact Mind: How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates That Affect Them Most 

Amy's book is available on Amazon in hardcover and on Kindle.

Click here to order.

Amy Lutz will be speaking about her new book in a webinar presented by the National Council on Severe Autism on Wednesday, October 11th, from 8 - 9 pm Eastern, 5 - 6 pm Pacific Time.

Register for free at NCSAutism.org

Our Fall Membership & Fundraising Campaign

This is a critical time for people who support choice for families of people with I/DD and autism.

We are asking our members to reach out to people in your neighborhood, your town, your state,

or on Facebook and other platforms,

to help us to grow a larger community of families

who are concerned about the

shortcomings of our DD System,

the biases against those with the most severe and profound I/DD and autism

and the erosion of choice in residential services and

employment opportunities

for our loved ones.

Please Click Here to Join, Renew or Donate

Following up in MA - Opinions:

The first two articles are opinion pieces following up on the recent Boston Globe Spotlight series.

Massachusetts - Harsh Light shed on Abuse of People with Disabilities. Now Take Action.

By Irene Tanzen, A Letter to the Editor of the Boston Globe, October 8, 2023

Thank you for your recent articles regarding individuals with autism (“There are no words”) or intellectual and developmental disabilities (“Not enough care to go around,”.

Massachusetts serves adults with severe autism or IDD in home- and community-based services. The goal of these services is to give individuals access to their communities. Just because an individual lives in a house in a residential neighborhood, does not mean they magically become part of the community. They require professional services, therapies, and community-based instruction to achieve this. And in too many cases, they’re not receiving these essential services.

In the 1980s, horrific abuse in institutional care was in full swing. Advocates worked hard to improve the institutions, now called intermediate care facilities. Today, residents of the Wrentham Developmental Center and the Hogan Regional Center receive the professional care they deserve. The Massachusetts Department of Developmental Services routinely denies requests to enter Wrentham or Hogan or state-run group homes.

Some disability organizations blamed the dysfunction of the 1980s on congregate care. But if congregate care was the problem, the community-based system would have made everything better. As the Globe articles have pointed out, this did not happen. Individuals with autism and IDD remain victims of abuse and neglect, but they live in houses and apartments, not in facilities devoted to their care.

Irene Tanzman

The author is the mother of an adult diagnosed with autism and is an active member of the Coalition of Families and Advocates

Read Irene's letter here (third letter down)

Massachusetts - Abuse at Residential Schools for Autistic Children Calls out for Accountability, Transparency

By the Editorial Board of the Boston Globe, October 3, 2023

Children with severe autism placed in residential schools are among society’s most vulnerable members. The state, which licenses these schools, has a responsibility to care for students.

A Boston Globe Spotlight investigation into horrific abuse and neglect at residential schools found that the state has abandoned its obligation to students, leaving students subject to the whims of caretakers who are often poorly paid and trained, without imposing adequate oversight and accountability on the schools.

This needs to change.

The investigation documents stories of physical assaults by caretakers on students with disabilities. Using public records scattered among agencies, a Globe reporter looked at 13 schools serving students with autism; the schools are licensed by the state and run by private nonprofits. It found that regulators at the Department of Early Education and Care documented nearly 1,000 licensing and safety violations during almost 450 separate investigations at residences affiliated with the schools since mid-2016, concentrated in about half of the schools. The Department of Children and Families substantiated allegations of abuse or neglect against school employees in more than 80 investigations since mid-2018.

The Globe report points to several systemic weaknesses that can and should be improved to better protect students.

The first problem is a lack of professionalization in a field that is generally low-paying and has high turnover. That low pay and high turnover result in inexperienced staff who are inadequately trained. While classroom staff, like teachers, need to be appropriately certified, there is no such certification for workers at the group homes where students live. The state requires criminal record checks and training but doesn’t set requirements for minimum qualifications, experience, or pay for the positions. Establishing minimum qualifications and pay, and ensuring adequate training and supervision for any home receiving a state license, would cost money and exacerbate staff shortages for a short time, but in the long term it would lead to a more professionalized industry where workers are better trained and stay at their jobs longer.

The second problem is a lack of transparency when abuse or safety violations occur. The Department of Early Education and Care maintains an informative online search engine where anyone can search for a child-care provider and find the results of their inspections and any investigations. No such website exists for residential schools. Creating a similar portal would help parents better evaluate programs.

The state does maintain registries of caregivers with substantiated allegations of abuse against them, which are available to potential employers when the person applies for another caregiving job. But a loophole means that some assaults at residential homes are not listed in either registry. The Department of Children and Families maintains a registry of people who abused children under 18. The Disabled Persons Protection Commission maintains a registry for people who abused adults in programs overseen by the Department of Developmental Services. Students with disabilities can remain in residential schools until age 22, and there is no registry for someone who abused an adult in a program overseen by the Department of Early Education and Care. This is an important oversight because while some incidents of abuse may turn up on criminal records checks, not all allegations of abuse, even those substantiated by a state agency, result in a criminal prosecution or a conviction. The Legislature should close this loophole.


The following stories concern actions taken by state and federal agencies to bring attention to the inappropriate placement of people with I/DD in nursing homes.

Unfortunately, none of the agencies involved accept their own complicity in this problem, through their ongoing actions to close admissions to ICFs instead of improving them to make them appropriate alternatives. They take no responsibility for having created a system where "person-centered planning" in HCBS long-term care group homes does not include planning for people whose conditions and challenges change as they age, or who cannot return to their group home because the provider gave their bed to someone else during their extended hospitalization.

How did Disability Rights New Jersey and the state DD Council suddenly notice that 2,000 of the people they were supposed to protect had been placed in group homes over the course of several years? Why did they not see the continued failures of the state's HCBS program, and why do they still fight to close the state's successful ICF system, instead of putting people into placements that do not meet their needs?

How does the DOJ close ICFs through class-action lawsuits, then file complaints when states are forced to find placements for people in nursing homes when their HCBS system cannot accomodate them.

Who really is at fault for this?

New Jersey - Hundreds with Disabilities in NJ are Forced into Nursing Homes, new report says

By Gene Myers, North Jersey Com, October 2, 2023

Hundreds of people with intellectual and developmental disabilities have been forced into nursing homes that lack the proper oversight or resources to care for them, a group of New Jersey advocates said in a report released Monday.

Disability Rights New Jersey warned that people with behavioral disorders, cerebral palsy, Down syndrome and other conditions are too often sent to nursing homes when group homes claim they can no longer accommodate them, or when home care becomes too challenging for elderly parents.

The group urged the state to better track such patients and to beef up monitoring of nursing homes where they may be housed. Those facilities were the site of an estimated 10,000 deaths in New Jersey during the COVID pandemic, and disability advocates said thAt least 2,000 people with developmental disabilities in New Jersey are housed in nursing homes “contrary to their wishes” and in violation of their constitutional rights because the state does not properly evaluate their needs or give them the option of living more independently in a group home, a new report has found.ey're often poorly prepared to care for those with complex disabilities.

“The state is not doing enough to identify these individuals or ensure their proper care and placement,” said Mercedes Witowsky, executive director of the New Jersey Council on Developmental Disabilities, a state advisory group that funded the report.

Best guesses put the number wrongly in nursing homes at hundreds, but with oversight split between the state Department of Human Services, which oversees programs for people with developmental disabilities, and the Health Department, which oversees nursing homes, people are falling through the cracks, advocates said.

The report was the result of a yearlong investigation that included hundreds of interviews and visits to 70 Garden State nursing homes, said Gwen Orlowski, executive director of Disability Rights New Jersey.

Placed in homes that fail to meet their diverse medical, physical and psychological needs, advocates said, such residents face conditions that violate Olmstead v. L.C., the landmark U.S. Supreme Court ruling that said the segregation of people with disabilities was illegal under the Americans with Disabilities Act.

Read the full article here

Follow-up article:

N.J. Wrongly Forces People with Developmental Disabilities into Nursing Homes

By Susan K. Livio, New Jersey Com, October 3, 2023

At least 2,000 people with developmental disabilities in New Jersey are housed in nursing homes “contrary to their wishes” and in violation of their constitutional rights because the state does not properly evaluate their needs or give them the option of living more independently in a group home, a new report has found.

The state Department of Human Services has allowed this problem to fester partly because it doesn’t keep track of how many people with developmental and intellectual disabilities actually live in nursing homes, the legal advocacy group Disability Rights New Jersey wrote.

Human Services reported to Disability Rights last year that 587 people with developmental disabilities resided in nursing homes, the report said. Based on its own research, Disability Rights said the figure is much higher, with 2,000 a “conservative estimate,” Executive Director Gwen Orlowski said.

Read the full article here

Justice Department Sues Colorado for Allegedly Segregating People with Disabilities  

By Meg Weingerter, The Denver Post, September 29, 2023

The U.S. Department of Justice sued the state of Colorado on Friday, alleging the state failed to take steps to stop segregating people with disabilities in nursing homes.

The department’s civil rights division sent a letter in March 2022 outlining alleged violations. It said Colorado had more nursing home residents with “low care needs” – who could presumably live at home with some support – than most states, and ranked poorly in transitioning people out of institutions.

Under the Americans with Disabilities Act and other federal laws, states are supposed to pay for support services through Medicaid so that low-income people with disabilities can live in the least restrictive setting that meets their needs. Those could include help managing medications, housekeeping, meal preparation and help with personal care like bathing and dressing, among other services.

Colorado has too few service providers, the lawsuit said, especially those helping people find housing that meets their needs. It alleged the state’s decision to regularly increase payments to nursing homes, but not to providers working in the community, contributed to the problem by making it financially unattractive to offer home services.

“Far too often, people with physical disabilities – including older adults – are institutionalized in nursing facilities when they could live in their own homes,” Civil Rights Division Assistant Attorney General Kristen Clarke said in a news release. “The Justice Department is steadfast in its commitment to protect the rights of people with disabilities and ensure the promise of community integration enshrined in the Americans with Disabilities Act.”

The lawsuit also said the state indirectly pushed people toward nursing homes by:

  • Not requiring home service providers to have plans if clients’ assigned workers are sick, which contributed to unreliable service
  • Only paying for home modifications (for example, installing wheelchair ramps) for people currently living in the community, not those wanting to move out of nursing homes
  • Not offering assistance finding housing to people who are at-risk of moving into a nursing home
  • Not informing people with disabilities of services that may be available
  • Delaying transitions out of nursing homes with a lengthy process to determine if residents qualify financially

he lawsuit didn’t say exactly what the Justice Department wants the state to do, though it noted Colorado could take steps to expand its home-care workforce, incentivize the creation of affordable housing that’s accessible to people with disabilities and do more to help connect eligible people to housing. It also said the state could streamline its processes to move people who’ve said they want to leave their nursing homes.

Read the full article here

Read the DOJ Statement here

In a similar action in Massachusetts:

Massachusetts - DOJ Files Statements of Interest in Marsters v. Healey

Statement from DOJ, September 30, 2023

On September 20, 2023, the Department of Justice filed a Statement of Interest in Marsters, et al. v. Healey, et al. This private lawsuit was filed in the District of Massachusetts by the Massachusetts Senior Action Center and several adults with disabilities who live in nursing facilities in Massachusetts. The lawsuit claims that plaintiffs are unnecessarily segregated in nursing facilities in violation of Title II of the Americans with Disabilities Act and the Supreme Court’s decision in Olmstead v. L.C. In a motion for class certification, the plaintiffs seek to represent a class of adults with a range of disabilities who reside in nursing facilities and have not been provided certain community-based services. The Department’s brief explains that class certification is regularly granted in Olmstead cases because (1) Olmstead cases raise common questions concerning the defendant’s systemic policies and practices and (2) single injunctive relief is appropriate to remedy the unnecessary segregation of a large group of people.  

On September 28, 2023, the Department of Justice filed a second Statement of Interest in Marsters, et al. v. Healey, et al. This private lawsuit was filed in the District of Massachusetts by the Massachusetts Senior Action Center and several adults with disabilities who live in nursing facilities in Massachusetts. The lawsuit claims that plaintiffs are unnecessarily segregated in nursing facilities in violation of Title II of the Americans with Disabilities Act and the Supreme Court’s decision in Olmstead v. L.C. The defendant, the Commonwealth of Massachusetts, moved to dismiss the claims of the named plaintiffs, arguing that they did not have an injury in fact to support standing. The Department’s brief explains that (1) unnecessary segregation is an injury in fact that meets Article III standing requirements and (2) plaintiffs need not request and be denied a specific service to establish standing to bring a claim under Title II of the ADA.


Advocacy Group Tells Feds Missouri’s Proposed Disability Changes Could Violate Law

By Clara Bates, Missouri Independent, September 29, 2023

The federally-funded organization responsible for protecting the rights of people with disabilities in Missouri believes a proposed change in how the state pays for at-home care could violate the law. 

Missouri Protection and Advocacy Services, which was established in 1977, said in a letter to the Centers for Medicare and Medicaid Services that it is “investigating the proposed changes and believes they may be in violation of federal law protecting people with disabilities against discrimination.”

The letter, sent last week by one of organization’s attorneys, Will Hack, argues the proposed changes are “harmful to Missourians.”

The proposed changes at issue involve the self-directed supports service within the Department of Mental Health, part of a Medicaid-funded program available to Missourians with developmental disabilities to directly hire their own care staff.

There are currently 3,031 Missourians relying on self-directed supports to fund their at-home caregivers. Without it, they would require inpatient care.

The state moved this summer to change the way if funds self-directed supports, to delink it from the rate it pays home health agencies and paying self-directed supports families based on last year’s lower rate instead of this year’s. The state will initiate a rate study this fall to determine future funding levels.

Families who use the program have decried the proposed changes as lacking transparency and potentially threatening their ability to provide competitive wages to their caretaking staff. 

Advocates also question why a rate study didn’t precede the decision to change the rates — and say it’s not a given that they should get less money than their agency equivalents.


Alaska’s Certificate of Need Laws Continue to Fuel ‘Skyrocketing’ Health Care Costs

By Quinn Townsend, Alaska Policy Forum, via Alaska Watchman, October 3, 2023

Health care costs across the nation, and especially in Alaska, are skyrocketing. Due to the state’s vastness and small population, healthcare facilities are concentrated in the state’s high-population areas, limiting access for those in remote areas. In addition to remoteness, Alaskans must contend with the consequences of Certificate of Need (CON) laws, which further limit the number of care facilities in the state and the services they can provide. Although policymakers can’t change the size of the state, they can repeal CON laws to increase care facilities and services available to Alaskans.

One Alaska CON law restricts the number and type of beds hospitals and other care facilities [including iCFs] can have. The state has restrictions on general medical-surgical beds, pediatric beds (including NICU bassinets), intensive care beds, acute rehab beds, and obstetric beds (which include birthing and recovery rooms in general). This means that a hospital in Alaska must obtain permission from the government, and with input from other competing hospitals in the same region, to add additional beds to its facility.

Research has shown that rural states with CON laws have fewer hospitals per capita. In fact, using data from 2016, researchers have found that, based on total population numbers and health data, Alaska could hypothetically have up to 10 more hospitals and two more ambulatory surgical centers if the state repealed its CON laws. This would result in an increase from 25 hospitals to 35, which could significantly increase Alaskans’ access to health care and decrease the distance some must travel to receive care.

Of course, no other state is as large, or has its population spread out as much as Alaska. One factor the researchers did not take into consideration was the distance between population centers. While there may not be ten additional communities in Alaska with the workforce to staff new hospitals, the research does clearly show that it would be easier for a new hospital or ambulatory surgical center to be established if CON laws were repealed and that there is a need for better (and more) health care access in Alaska.

In fact, according to data collected by the Kaiser Family Foundation, there are only 2.24 community hospital beds per 1,000 Alaskans in the state. The US average is 2.37 beds per 1,000 people — not much better. In comparison, South Dakota and North Dakota (rural, sparsely populated states) have some of the highest beds per 1,000 people, with 4.75 and 4.41 beds, respectively. While there are certainly multiple factors affecting the number of hospital beds in a state, neither South Dakota nor North Dakota have any CON laws, and both states had repealed their CON laws by or before 2000.

Read the full article here

New York - Man's Death in State Group Home Missed for 11 Hours despite Required Bed Checks

By Lou Michel, The Buffalo News, October 1, 2023

At 10 a.m. on a Saturday four years ago, James M. Kuhrt of Hamburg called a state-run group home in Little Valley to check on his grown son.

A worker told him Christopher J. Kuhrt, who was developmentally disabled, was still sleeping and everything was fine, the family recalled.

But that was not true.

A coroner and autopsy determined Kuhrt had choked to death on his vomit the night before, at approximately 11 p.m.

But even after the father’s phone call, more than 30 minutes would lapse before Kuhrt was found dead in his room with vomit on the walls.

Under Kuhrt’s care plan, the staff was supposed to conduct “signs of life” bed checks on him every 30 minutes to make sure he was breathing.

But one of the direct support assistants at the home operated by the New York State Office for People With Developmental Disabilities has admitted she did not conduct the checks.

Another assistant testified she conducted checks by looking in from the doorway of Kuhrt’s room, but she could not see his face and took no additional steps to determine if he was breathing.

A third assistant testified that it was a common practice at the state group home to falsify the bed check logs. When she brought that to the attention of supervisors, she said no action was taken and that other workers yelled at her for performing thorough checks.


Arizona - 30+ People with Developmental Disabilities Without Jobs, Therapy after Mesa Center Abruptly Closes

By Adriana Loya, NBC 12 News, October 3, 2023

At least 30 people with developmental disabilities are out of their state-funded jobs after the center that provided them with employment and therapy closed on Friday.

Families told 12News they were given a week's notice. 

The company is called Zion Compassion Care, its website says the facility's work improves “members’ abilities to achieve independence and quality of life” for individuals who are disabled or have special needs.

The Mesa location closure, near Guadalupe and Hawes roads, last week left dozens of families scrambling for the services they need.

“They failed these kids and they failed my kid,” said Rebecca Sloan.

Her son, Nathan Howard, was born with his umbilical cord wrapped around his neck, which she said cut off oxygen and caused permanent damage. When he was 2-years-old he was diagnosed with an intellectual disability. Since then, Sloan has been her son’s primary caregiver and legal guardian. Howard is now 27 and thriving.

He was doing custodial work for Zion Compassion Care as part of the state-funded program called Group Supported Employment, Sloan said. He was also getting speech therapy and took part in day treatment for adults, supervised activities to help improve the quality of life and develop skills in independent living, self-care, communication and social relationships.

“He loved it there,” Sloan said. “My son has a girlfriend he met at this program. So, it was very upsetting to get the short notice it was closing. They said they were shutting the program because they didn’t have the lease on the building anymore.”

12News spoke to the company’s owner over the phone. He said he couldn’t afford the new lease and had to shut it down. But he was adamant he followed all state rules in shutting down.

Sloan said her son wants to apply to do custodial work at his nearby school, but worries that other participants don’t have enough help to find new work and therapy placements.

“Everyone is scrambling and who knows who is going to fall through the cracks,” the mother said. “They also have income loss and might not have enough to pay for their rent or bills.”


Montana - Why Intermountain Residential is ‘Worth Fighting For,’ Despite Months of Turmoil

By Mara Silvers, Montana Free Press, October 4, 2023

When Hope Dyson arrived at Intermountain Residential in 2012, she was struggling to find healthy ways to express her anger. At two years old, she had been adopted from Sierra Leone by a large Tennessee family, and she arrived at the Helena campus as an 11-year-old diagnosed with autism. Hope was trying to figure out who she was. Her parents and siblings were looking for any way to help her.

At Intermountain, she lived in one of the program’s “cottages” alongside other kids with severe emotional disturbances and traumatic histories. Hope and the other children went to school on campus and received round-the-clock care from on-site therapists and staff members. By the time she left the program 18 months later, Hope recalled, she had started to learn new skills for managing her feelings.

“They taught me there were other ways to cope with my anger,” the 22-year-old said in a recent phone interview. “Not just punch a hole in the wall.” 

Now, Hope uses other outlets for her emotions, like throwing shot put and discus in her free time. She lives independently in Nashville and describes herself as a passionate advocate for people with disabilities. 

Her mother, Darlene, said that at the time a residential group home seemed “really the only way” to help Hope regulate and allow her family to transition out of “crisis mode.” Unlike psychiatric facilities or programs that use reward-based systems to encourage better behavior, Intermountain’s therapeutic approach was fundamentally about building strong relationships and trust with adults, Darlene said, and required the rest of the family to develop new resources and skills, too. 

“It’s just a different style of therapy,” Darlene said. Other strategies, like behavioral incentives, had seemed irrelevant to her daughter. “She could be in the moment and I could offer her the moon and it didn’t matter. She was so dysregulated,” Darlene continued. Intermountain’s “model of trust was what worked best with Hope.”

Many current and former families share the assessment that Intermountain Residential’s approach helped troubled kids when nothing else did. They maintain that the changes many residents experienced were both deep and lasting, and were not the result of medications or reward-based behavior modification. Others noted that the program, which currently accepts children between the ages of 4 and 14, was willing to work with their young children when other residential options wouldn’t. 

Now, many staff, families and alumni fear that the essence of the program will become a thing of the past. In early September, the nonprofit announced its intent to temporarily close the program because of short staffing and repeated warnings from its residential leaders about unsustainable rates of employee turnover. 

The news, including the announcement that Intermountain would be discharging the 16 children then in its care, sparked an emotional and logistical uproar. Parents and staff protested the closure, spoke out in local media and appealed to the organization’s board to reverse the decision. After weeks of turmoil, attorneys representing several staff members and parents negotiated an extension, agreeing that the campus would stay open at least until Nov. 30, and possibly later, giving parents more time to try to find other placements for their children. As recently as Oct. 3, the plan changed again. In a statement to staff shared with media outlets, Intermountain walked back the possibility of all-out closure, saying leadership had developed a plan aimed at keeping one cottage open while strategizing about how to “rebuild” the program.

The organization’s long-term future remains unclear. While the board and interim CEO Gary Larcenaire have promised to stabilize and eventually expand the program, some current and former staff and clients doubt that intention and question the current leadership’s commitment to Intermountain’s therapeutic DNA. The elements that define its residential services have been honed over decades, staff and families say, and will need to be carefully tended to keep the program operating for years to come. 

For many, the disintegration of Intermountain’s particular model of care would be an almost incalculable loss.

Read the full article here

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VOR Bill Watch:

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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.

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