July 21, 2023

VOR's Weekly News Update

Notice: Virginia's DOJ Settlement Agreement Hearing

July 27, 2023 1:00 pm

701 East Broad Street, Room 6000

Richmond, VA

Judge Gibney has scheduled a Public Status Hearing in Richmond. It is important for stakeholder families to appear to voice their concerns.

If you are unable to attend the Hearing, please share your thoughts with the Judge directly by sending letters outlining your story and your concerns for Virginia's Disability System. 

We begin this week with an editorial by our good friend Jill Escher, the President of the National Council on Severe Autism (NCSA) and a board member of the Autism Society of the San Francisco Bay Area.

The Autism Surge: Lies, Conspiracies, and My Own Kids

By Jill Escher, The Free Press, July 20, 2023

In the summer of 2001 we took our younger son, two-year-old Jonathan, to the neurologist. He hadn’t developed speech, never played with toys, and had a compulsion to stare at cracks in the pavement while flapping his hands. The diagnosis was almost instant: autism. “He has it in spades,” the doctor said.

Autism? We had hardly heard the term growing up, and we had nothing remotely like it up our family trees. My pregnancy was healthy and free from risk factors. Yet here we were, handed a devastating diagnosis, with our son sentenced, for no reason we could discern, to a lifetime of severe mental impairment. And it wasn’t just Jonny. All around us grew a rapidly rising tide of autism. The numbers were surging in the local school districts. The regional developmental disability agency had become overwhelmed with new autism intakes. Serious autism, hard autism—not a sort anyone would have missed before.

When I was pregnant five years later, doctors assured me it was unlikely lightning would strike twice, especially because Jonny’s autism was not caused by some familial genetic defect, but by the time adorable Sophie was 16 months old, the signs were clear. No pointing, no peekaboo, no playing with toys. Like her brother, she met none of her cognitive or language milestones, not even close. Autism, again. In spades.

Today, despite extensive therapies and specialized schooling, both Jonny, 24, and Sophie, 17, remain nonverbal and profoundly disabled by autism. What does that look like? Well, the other day during our daily outing, Jonny found a tube of sunscreen in the car and rubbed it all over his shorts. Not exactly a good look, but undeterred, we entered the boba place for his favorite smoothie. Though I grasped the back of his t-shirt, he bolted out, and it’s beyond my capacity to wrangle the 180 pounds of him back in. Once settled in the car, he bit on an armrest.

Sophie, my cheerful constant companion, has a joyous smile, and unlike Jonny is so highly adaptable that she skis Tahoe’s tallest mountains and will happily chill at any Grateful Dead tribute concert. But like her brother she cannot talk, read, or write, or grasp even the most basic of abstract concepts—not even family or week or birthday. While young ladies her age are applying to college, she’s still not sure how to brush her teeth or put on her socks. Her learning is stuck, Groundhog Day-like, at a toddler level.

Even now nobody can tell us what could possibly have caused these extreme mental disabilities in our children—nor can they, shall I add, in the vast majority of autism cases. It’s not your imagination: the field is stagnating in the wake of wave after wave of unsuccessful attempts to understand the origins of autism, or to alter its trajectory. 

The recent rise of the “neurodiversity” identity movement, where autism is reinvented as a natural difference to be celebrated, not investigated, prevented, or treated, has helped spread a fairy dust of complacency over the autism world. While rates continue to climb—to 1 in 36, or nearly 3 percent, of all eight-year-olds by the latest count from the Centers for Disease Control and Prevention (CDC)—the world, except of course for parents like me, seems to be waving a white flag of surrender. It’s become de rigueur to normalize autism rather than treat it as the national emergency it most certainly is.

The examples are everywhere. The leading autism conference, INSAR (International Society for Autism Research), which once focused on serious-minded biological research, has drifted into something of a celebration of neurodiversity. In this reality distortion field, Lee Wachtel, MD, medical director of the Neurobehavioral Unit at Kennedy Krieger Institute in Baltimore, which treats hundreds of autism patients, said to a group of us parents, “I work in a war zone, but here at INSAR you’d think autism was a celebration.”

Journals regularly publish papers by language-policing neurodiversity advocates urging a purge of common and useful terminology like deficit or disorder so as to reduce supposed stigma associated with autism. Even the leading autism journal now suggests authors avoid ordinary terms like disruptive behaviors or challenging behaviors, saying the journal is “decreasing the number of accepted articles focusing solely on weaknesses, problems, and deficits”—even though the Diagnostic and Statistical Manual (DSM) defines autism by its very evident impairments. Apparently we are supposed to see our children, many of whom are among the most critically disabled people on the planet, as disabled only by a society that fails to understand them, and not by any biological deficit.

Worse, meetings of the federal autism advisory committee—the Interagency Autism Coordinating Committee, or IACC—chaired by the National Institute for Mental Health, and authorized by the Autism CARES Act, are notorious for becoming more social justice theater than as fora for addressing urgent questions. The IACC started life as the Combating Autism Act in 2006, but the title changed in 2014 to the Autism CARES Act after proponents crumbled to pressure from neurodiversity advocates. 

Meanwhile, disability policies based on fantastical conceptualizations of ability are creating cruel consequences for our most vulnerable. The few jobs that are within the grasp of many adults disabled by autism are under threat of complete elimination. A push to eliminate sub-minimum wage job programs, which offer the only legal avenue to employment for the severely cognitively disabled, means people like my kids will lose their only chance at structured, supported, productive work, and will be pushed even further to the margins of society. 

Read Jill's full article here

A federal judge has delivered a stunning rebuke to Florida health administrators, ruling that the state’s long-standing failure to provide adequate care to children with complex medical needs has resulted in the “tragic” and illegal warehousing of fragile children in institutions.

Florida’s unwieldy system of funding and providing care for children with medical complexities, which relies largely on managed-care providers who are unaccountable to the state, has left families in “a maze almost impossible for parents to escape,” wrote U.S. District Judge Donald M. Middlebrooks. Because so many of the children require constant care, parents are forced to leave them in nursing homes, where some spend their entire lives.

Middlebrooks ordered a series of remedies designed to allow parents to remove their children from institutions — and make it easier to keep their children at home if they are already there.

The state, Middlebrooks wrote, “is violating the rights of children with medical complexity who rely upon the provision of vital Medicaid services and are trying, in vain, to avoid growing up in nursing homes.” Medicaid is the state’s insurer of last resort for impoverished and disabled Floridians and underwrites the care for virtually all medically complex children, whose medical expenses can cost millions.

Because “the state has refused to engage in efforts to craft any meaningful solutions,” Middlebrooks said he would appoint a court monitor to oversee Florida’s compliance with his order and issue reports every two months.

In his order, Middlebrooks called “overwhelming” the “evidence of Florida’s failings in administering” medical care to such children, many of whom can be fed only through tubes connected to their stomachs, and breathe with the aid of tubes and ventilators.

A spokeswoman for the Agency for Health Care Administration, which oversees the state Medicaid program, said Florida “intends to immediately seek a stay and appeal.”

“The judge’s failure to understand the law is demonstrable in his order. The court’s conclusion that the state’s actions or omissions force children to live in nursing homes against their parents’ wishes is unsupported and refuted by the evidence presented at trial,” said Bailey Smith. “During the trial, witnesses testified that their medically complex children were in nursing homes for various reasons unrelated to the state or its policies,” she added.

At trial, the state offered testimony from a Broward County pediatrician who argued that many of the children currently in institutions could not be safely transitioned to a community setting because their parents’ homes were too small and lacked adequate medical equipment, and because the parents weren’t capable of providing the kind of care nursing homes offer. Middlebrooks said such “reasoning is flawed,” because such obstacles “often [were] within the state’s control.”

In a letter to his students Monday, one of the two Florida law school professors who initiated the litigation more than a decade ago said that while Middlebrooks’ order was a victory for people with disabilities and their advocates, much work was left to be done to ensure health administrators made the necessary changes.

“After 12 years, medically fragile children have hope that the door of the nursing facilities will be open for them to leave and that they will receive their doctor-prescribed services,” wrote Paolo Annino, who oversees the Public Interest Law Center at Florida State University’s College of Law. “Medically fragile children will not be able to walk out of the nursing homes by themselves. They will need Florida children’s advocates to make sure this order is enforced.”

Under federal laws, such as the landmark Americans with Disabilities Act, signed by then-President George H.W. Bush in 1990, people with disabilities are entitled to live in family homes or other community settings whenever possible. But Florida health administrators and the managed-care organizations with which they contract made it nearly impossible for parents to access necessary care and services outside of institutions, Middlebrooks wrote.

The judge ordered that Florida health regulators begin to correct the discrimination “immediately”: “The children involved are among society’s most vulnerable,” he wrote. The judge called tragic the fact that three children who had been part of the litigation over the youngsters’ rights died before the case was resolved.

At the center of the dispute is the provision of in-home nursing care to Floridians who rely on Medicaid to pay their medical bills. In his order, Middlebrooks said that low reimbursement rates, together with poor state oversight of managed-care providers, made it difficult for most families to access sufficient in-home nursing, even when the managed-care plans authorized it.

Testimony presented at a trial showed that only 6.5% of Florida children with medical complexity were able to access all of the private-duty nursing hours they were prescribed. That amounted to only 128 out of 1,956 children included in a review of state Medicaid data.

Moreover, a witness for the U.S. Justice Department, which took up the cause, reported that there were few “indications that the state was actively trying to address” the shortage of private-duty nursing, the order said.

Read the full article here

Another perspective on the Florida case:

Cayden Armour has lived most of his life in a Florida nursing home, where his father said the disabled 9-year-old was often left alone in his room, sitting in soiled diapers for hours.

Cayden, who has multiple medical complications after nearly drowning as an infant, is one of many children in Florida who have been separated from their families and institutionalized rather than getting state-provided at-home care.

Now, a federal judge has ruled that Florida has been unlawfully segregating children with complex medical needs and putting other disabled children at risk of unnecessary institutionalization. The judge, who issued the ruling Friday, said that by failing to provide Medicaid services that would pay for private nursing care and allow children to live in home settings, the state was in violation of the Americans With Disabilities Act.

In court records and interviews with The Washington Post, parents of disabled children described a broken system in which they often felt forced to send their children to nursing homes because they couldn’t get reliable state-provided home care. Once institutionalized, the children were neglected; frequently hospitalized with infections; and left in soiled diapers for hours, crying and depressed, their families told The Post.

The cost of home health care can be cheaper than institutionalized care, but Florida has increased funding for nursing facility services while reducing funding for home- and community-based services, court documents show.

The ruling, prompted by a lawsuit filed by the Department of Justice in 2013, could have sweeping implications for thousands of people across the country who need these Medicaid services to live in their homes or communities, a group that includes adults with disabilities and older people, along with disabled children and their families.

The Florida Agency for Health Care Administration, which is responsible for running the state’s Medicaid program, declined requests for an interview.

In a statement, the agency said, “The court’s conclusion that the State’s actions or omissions force children to live in nursing homes against their parent’s wishes is unsupported and refuted by the evidence presented at trial.”

The agency also said it would seek to stay the judge’s orders. The state filed a notice of appeal for the case Monday.

The Florida Department of Health and other witnesses for the state of Florida declined to comment on the case.

The ruling directly affects an estimated 140 children in Florida nursing homes and more than 1,800 children at risk of being institutionalized because they don’t have reliable access to home-care services. Disability advocates and legal experts say the case is expected to set a precedent by clarifying what states must do to comply with the Americans With Disabilities Act, which protects the rights of people with disabilities to live in the most integrated setting possible.

The ruling makes clear that states can be held accountable for the way they administer home- and community-based services, legal experts said.

“In many respects, this ruling is groundbreaking,” said Kristen Clarke, the assistant attorney general for the Civil Rights Division at the U.S. Department of Justice. “Our hope is that this ruling will stand as a model for other states across the country and make clear and explain their obligations under the law.”

Read the full article here

And one more perspective:

Court Finds State of Florida Violates the Americans with Disabilities Act by Institutionalizing Children with Disabilities

Press release from the DOJ Office of Public Affairs, July 18, 2023

Click here to read the official statement from the D.O.J.

Insurers Deny Medical Care for the Poor at High Rates, Report Says

Investigators found that major companies overseeing Medicaid patients’ health care frequently rejected doctors’ requests for approval of treatments and procedures.

By Reed Abelson, The New York Times, July 19, 2023

Private health insurance companies paid by Medicaid denied millions of requests for care for low-income Americans with little oversight from federal and state authorities, according to a new report by U.S. investigators published Wednesday.

Medicaid, the federal-state health insurance program for the poor that covers nearly 87 million people, contracts with companies to reimburse hospitals and doctors for treatment and to manage an individual’s medical care. About three-quarters of people enrolled in Medicaid receive health services through private companies, which are typically paid a fixed amount per patient rather than for each procedure or visit.

The report by the inspector general’s office of the U.S. Department of Health and Human Services details how often private insurance plans refused to approve treatment and how states handled the denials.

Doctors and hospitals have increasingly complained about what they consider to be endless paperwork and unjustified refusals of care by the insurers when they fail to authorize costly procedures or medicines. The companies that require prior authorization for certain types of medical services say these tools are aimed at curbing unnecessary or unproven treatments, but doctors claim it often interferes with making sure patients receive the services they need.

The investigators also raised concerns about the payment structure that provides lump sums per patient. They worried it would encourage some insurers to maximize their profits by denying medical care and access to services for the poor.

The report emphasized the crucial role that state and federal officials should play to ensure the denials were justified. “People of color and people with lower incomes are at increased risk of receiving low-quality health care and experiencing poor health outcomes, which makes ensuring access to care particularly critical for the Medicaid population,” the investigators said.

Continued

Nearly 3 Million People Cut from Medicaid Coverage even though Many Might Still be Eligible

By Spencer Kimball, CNBC, Updated on July 20, 2023

Nearly three million people have been kicked off Medicaid since Covid-19 pandemic protections expired in April, with three-quarters of those individuals losing coverage despite the fact they may still be eligible for the public health insurance program, according to data from health researcher KFF.

Medicaid is the public health insurance program for lower-income individuals and families. It is heavily financed by the federal government but largely managed by state governments.

The widespread removal of coverage is a worrying trend because people who lose one form of insurance often struggle to find alternative coverage due to the complexity of the U.S. health insurance system, putting them at risk of ultimately becoming uninsured.

About 75% of the 2.7 million people who have lost Medicaid coverage across 32 states and Washington, D.C., were booted from the program because they did not complete the process to renew their coverage, according to the the most recent data, which was published Monday.

That means their insurance may have been terminated even though they are still eligible for Medicaid.

Texas and Florida account for the largest shares of people kicked off Medicaid in recent months. Half a million people have lost their coverage in Texas, 81% of whom had their insurance terminated because they did not complete the renewal process. In Florida, 300,000 people lost coverage, 65% of whom did not complete the paperwork.

The number of people who have lost Medicaid coverage will only increase this month as another 11 states start the renewal process for the first time in three years, including large states such as California and New York.

Continued

500,000 Texans Have Been Dropped from the Medicaid Rolls Since April

By Eleanor Klibanoff, The Texas Tribune, July 17, 2023

Half a million Texans have lost their Medicaid coverage since April, mostly for procedural reasons like not responding to messages from the state.

Preliminary data, released Friday by the state’s Health and Human Services Commission, paints a grim picture of Texas’ early efforts to redetermine Medicaid eligibility for the first time since COVID-19 hit three years ago.

Nowhere was this “unwinding” going to be easy. But Texas — with its high uninsured rates, strict rules to qualify for Medicaid and persistent delays in verifying eligibility — was on particularly poor footing to handle the sudden influx of renewals.

Now, hundreds of thousands of Texans are scrambling after suddenly losing health insurance — and the consistent care from trusted health care providers that it enabled them to access. Meanwhile, advocates say many of the people who lost coverage may actually still be eligible, and they’re calling for the state to pause redeterminations until they can ensure low-income children don’t fall through the newly apparent cracks in the renewal system.

“If the high percentage of procedural denials continues, then Texas is on the verge of knocking a lot of eligible kids off of their health insurance,” said Diana Forester, director of health policy at Texans Care for Children. “If state leaders can’t quickly pivot to a more effective process, then they should consider pausing the Medicaid removals until they can get this right.”

Continued

‘Waiver’ Programs Part of Wyoming Medicaid Renewals

By Staff, Oil City News, July 18, 2023

Wyoming Medicaid participants, family members, providers and case managers are being reminded by the Wyoming Department of Health that the state’s “waiver” programs are part of Wyoming Medicaid and are subject to the annual renewal process, according to a Wyoming Department of Health press release.

Medicaid, a joint federal–state insurance program, provides coverage for the medical and long-term care of low-income and medically needy individuals and families.

Wyoming Medicaid offers three waiver programs:

• Community Choices Waiver for individuals aged 65 and older or those aged 19–64 with a qualifying disability.
• Supports Waiver for individuals of all ages with an intellectual or developmental disability or acquired brain injury.
• Comprehensive Waiver for individuals of all ages with an intellectual or developmental disability or acquired brain injury who meet emergency and eligibility criteria.
• 
  

Elizabeth Forslund, the administrator of the Home and Community-Based Services Section with the WDH, expressed concern that participants may not realize they are part of the Medicaid program due to the distinct nature of the waiver programs compared to traditional Medicaid.

With the renewal process underway in Wyoming, it is important for waiver program participants to understand that they are subject to the renewal requirements to maintain their Medicaid coverage.

Forslund emphasized the importance of completing the necessary forms on time to avoid losing coverage.  

Continued

North Carolina - Regulators Approve Two Group-Home Facilities in Rural Hall

By Richard Craver, Winston Salem Journal, July 17, 2023

State health regulators have approved the establishing of two six-bed group homes on the same site in Winston-Salem for individuals with intellectual and developmental disabilities.

The groups propose spending $2 million on the project, which will be known as Arches I and Arches II. The group homes will be located on Horizon’s main campus at Horizons Lane in Rural Hall. The intermediate care facilities can accept Medicare and Medicaid beneficiaries. The project involves moving 10 beds from The Arches and two beds from The Atrium/Respite.



Once the 10-bed transfer is complete, every resident at The Arches off Bethabara Park Road in Winston-Salem will have been transferred and that facility will be closed. The current Atrium/Respite will be reduced to 28 residents.

According to the federal Centers for Disease Control and Prevention, these group homes “must provide active treatment” for residents, many of whom have other disabilities along with intellectual disabilities.

Those can include: non-ambulatory issues; seizure disorders; behavior problems; mental illness; visual or hearing impairments; or a combination of the above. All must qualify for Medicaid assistance financially.

Horizons said in the CON application that by opening Arches I and Arches II, it “will move substantially closer to achieving goals that benefit the individual resident and the community as a whole.” “From the residents’ perspective, we will have made both quality-of-life impacts, as well as civil rights impacts. The residents will be moved from the standard congregate care environment into a highly individualized and intimate setting.

“The residents will have greater opportunities to integrate into their community, and we will have greater opportunities to integrate into their community. We will improve our capacity to organize and transport smaller groups of individuals to opportunities throughout the county.”

Read the full article here

New York - Opinion: Kids with Disabilities Deserve Better Schooling: Parents Must Spend Every July Fighting the Department of Education on Behalf of their Children

By Charles Hammerman, New York Daily News, July 18, 2023

Among the countless obstacles confronting the 486,418 New York City children with disabilities, gaining access to the classroom shouldn’t be one of them.

If there’s one issue that resonates with most NYC parents of children with special needs, it is the pressing need to overhaul the flawed system that hinders families in their quest for appropriate educational opportunities. Despite a federal law guaranteeing all U.S. children with disabilities the right to a free and suitable public education, the New York City school system continues to pose numerous obstacles that impede the realization of this protection.

It’s time for a change.

The process of applying to schools for children with special needs is mired in ongoing legal disputes between the Department of Education and parents, who face the annual burden of proving their child’s disability through lengthy hearings.

While July typically marks summer break for most parents, it carries a different significance for parents of children with special needs. Every July these parents are required to initiate a tolling process of litigation with the city, striving to prove that the public school setting is inadequate for their children — and they are required to repeat this process each year.

Only after winning these legal battles can families hope to secure a spot in a school that caters to their child’s specific needs. However, even after a successful outcome, families often endure years of waiting for reimbursement from the Department of Education to cover tuition expenses.

Recognizing this pressing issue, the Disability Opportunity Fund (DOF), a community development financial institution dedicated to providing financing and technical services to organizations supporting people with disabilities, has provided more than $6.5 million in debt financing to NYC schools in need of financial assistance.

As we embark on transforming this flawed system, we must consider short, intermediate, and long-term solutions to address the problem at hand.

In the short term, we propose the establishment of a 0% “financing window” to allow private schools in New York City to borrow tuition bridge funds — temporary funding that helps the schools cover their costs until they get repaid — while awaiting settlement funds from the government.

In the intermediate term, it is crucial to convene an independent, think-tank like committee, made up of experts, stakeholders, and representatives from both the public and private sectors. This committee will collaborate to develop practical solutions, utilizing technology, to tackle the backlog of cases and the obligations arising from various lawsuits. The goal is to expedite the resolution of disputes and prevent new cases from further burdening the system. By tapping diverse perspectives and knowledge, the committee can propose innovative approaches and strategies.

Longer term, a fundamental transformation in the educational system is imperative. The current litigation process is convoluted and ineffective, hindering the delivery of high-quality services mandated by federal law. To address this, we must devise effective solutions that eliminate the need for extensive litigation.

One significant reason for the existence of private schools catering to special needs students is the inadequacy of services in public schools. We propose a paradigm shift that involves public schools partnering with private schools and merging the services offered by private schools into the public school system. Engaging in discussions with teacher unions and other relevant organizations is crucial to breaking down the “Us versus Them” mentality and fostering collaboration for the benefit of all students.

Read the full editorial here

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VOR SUPPORTS:

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

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

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

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

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

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

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

H.R.670 - Think Differently Database Act

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

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

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

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

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

H.R.3380 - HEADs UP Act of 2023

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

VOR OPPOSES:

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

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

S. 1148 - The Guardianship Bill of Rights

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

VOR HAS SIGNIFICANT CONCERNS WITH:

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

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

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

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

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

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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