VOR's Weekly News Update
VOR is a national non-profit organization
run by families of people with I/DD and autism
for families of people with I/DD and autism.
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VOR's 2024 Legislative Initiative
MAY 7 - 9, 2024
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Achieving Equity For All People With Autism
By Jackie Kancir, Helen, April 22, 2024
March should signify spring and renewal, but for many in the autism community, the spring solstice rains down a flood of cortisol knowing the 30-day total eclipse from reality is near again. While some take early shots across the bow before April even arrives, others open the month trying to calm the exhaustive rifts with positive messages that aim to redirect to common goals, respect, and kindness.
This April, the White House abandoned at least 27% of the autistic population, as well as the many others who fall just outside the criteria for profound autism, with its “Proclamation on World Autism Awareness (strike “Awareness”) Acceptance Day,” rich with carefully crafted language such as “autism spectrum” (strike “disorder”).
The proclamation’s though kumbaya but tone-deaf messaging on the edge of the Autism CARES Act sundowning this fall can’t be blamed on the current administration. After all, we have had seventeen years complete with two democratic presidents and two republican presidents since the Combating Autism Act of 2006 (reauthorized as the Autism CARES Act in 2014) and all of its money, research, and Interagency Autism Coordination Committee (IACC) guidance to help inform legislators, policymakers, researchers, educators, and healthcare systems what people with autism spectrum disorder (ASD) want and need.
Nevertheless, the Government Accountability Office (GAO) continues to show the lion’s share of autism research has likely been unnecessarily duplicative. Since the last reauthorization, researchers have also discovered nearly 27% of people with autism spectrum disorder have become nearly extinct from research due to selection bias.
Mensa-qualifying autistic activists with undeniable special abilities and the communicative capacity to self-advocate have rightfully sat at the highest levels of decision-making tables for autism-related matters. Unfortunately, the chants of “nothing about us without us” truncated the unspoken end-phrase–”as long as they’re like us.” The voiceless side of autism, the ones so cognitively impaired that even AAC could not help them effectively communicate, those who required trusted carers to communicate as their proxy, they were shunned from those tables of discussions when parents were silenced.
The social model side of the autism advocacy community often argues that intellectual disability, not autism, is the cause for any symptoms not worthy of celebrations and infinite rainbows. The people with autism who need helmets to prevent traumatic brain injury as they repeatedly beat their heads on the floor, the ones who bite chunks from their own arms, the ones who sprint into oncoming traffic with zero fear of danger, the ones who ingest screws and other inedible objects they find, the ones who require continuous life-long specialized supports and services 24/7 and lack the ability to self-advocate–well “that’s just intellectual disability, not autism.”
Though that is not correct, why would it matter if it was? I can’t help but think of the people with profound intellectual disability who may manifest with challenging behaviors but do not have a co-occurring autism diagnosis. Do their lives not matter, too? The blame for the diagnostic shifts is partly on healthcare insurance companies, many who limit specific treatments to those only with an autism diagnosis. Anyone in that level of severe behavioral crisis should have access to a full diagnostic workup with a specialized team trained in a biospsychosocial approach, but sadly, those are few and far between, even for those who do have an ASD diagnosis. Providers should be cautious when finding a cause for the behavior surges. It may be just that, a cause. In many cases, there may be a multitude of causes for major shifts from baseline. Good communication with the primary caregiver is helpful to understand what has recently changed from the baseline. Diagnostic tools such as urine and blood labs or x-rays, and consults with a multidisciplinary team of doctors can help rule in other contributing factors. Dental pain, UTIs, and constipation are some of the most frequent causes of challenging behavior surges. Missed opportunities to resolve these highly treatable conditions can lead to serious bodily harm if the behavior crisis is not stabilized. Least restrictive, non-invasive, whole-person evaluations can save a person with profound autism from serious harm and overly restrictive settings.
When parents and providers advocate for autistic individuals with these debilitating life-threatening symptoms, the social model side calls them ableists, accuses them of “deficit mindsets,” and tells them to “take the dis out of ability.” For autistic people who don’t experience these symptoms, they have often been marginalized and ridiculed by people who used to attribute these types of severe challenging behaviors as what defined autism. Thus, they call these symptoms “stigmatizing.” For them, they are. For our children, they’re reality, and if their reality is ignored and untreated, their existence is confined to enduring the most unjust disparity that exists in our healthcare system today.
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Overtime Mandate May Threaten Access To Disability Services
By Michelle Diament, Disability Scoop, April 29, 2024
Services for people with developmental disabilities across the nation could soon face additional cuts, an unintended consequence of a requirement that millions more workers qualify for overtime pay.
The U.S. Department of Labor said this month that it is finalizing a rule raising the salary threshold at which employers will be required to pay overtime. The change is expected to affect about 4 million workers nationwide in the first year.
Now, disability advocates say that the move to raise wages could yield severe consequences for people with developmental disabilities who need supports to live in the community. That’s because disability service providers depend on funding from Medicaid and without changes to reimbursement rates, they have no way to pay their workers more.
“Though rightfully focused on shoring up our nation’s workforce, DOL has unfortunately and dangerously overlooked the impact this increased overtime salary threshold will have on Medicaid-funded disability service providers,” said Barbara Merrill, CEO of the American Network of Community Options and Resources, or ANCOR, which represents 2,100 disability service providers across the nation. “Unless lawmakers increase Medicaid reimbursement rates to allow providers to meet this unfunded mandate, many providers simply won’t be able to comply with this rule without closing programs and services, thereby risking employment for thousands of workers and threatening access to crucial services for people with disabilities.”
ANCOR issued a report last year warning that the increased threshold for overtime pay would prompt over $1 billion in added expenses for disability service providers in the first year alone.
The report included a survey of 700 providers across 45 states. A third indicated that they would be forced to cut positions if the proposed rule took effect, while 61% said they would convert salaried employees to hourly and nearly half said they would limit overtime.
Under the Labor Department’s final rule, employers will be required to pay overtime to most salaried workers earning less than $43,888 starting July 1 if they work more than 40 hours in a week. That threshold will rise to $58,656 in January and, starting in July 2027, the level will update every three years based on wage data.
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House Republicans Bash New Nursing Home and Home Care Rules at Hearing
By Joyce Frieden, Medpage Today, May 1, 2024
A Medicaid official tried to walk a fine line Tuesday as House Republicans expressed their displeasure with new Medicaid rules implementing minimum nursing home staffing requirements and higher pay for home care workers.
"While I agree that we need to do more to ensure our frontline caregivers and clinical care providers are compensated commensurately with the care they're providing, and offer a better quality of life for our most vulnerable, this approach simply won't work," Rep. Brett Guthrie (R-Ky.), chair of the House Energy & Commerce Health Subcommittee, said at a hearing on proposed legislation to increase Medicaid access and crack down on improper Medicaid payments. "These rules come at a time where we have seen more than 500 nursing home facilities close since the start of the pandemic and where we have 150,000 fewer long-term care workers than we did before 2020."
Referring to new rules requiring nursing homes to have an RN on staff 24 hours a day, 7 days a week and requiring them to have enough nursing staff to provide about 3.5 hours of personalized care per resident per day, Rep. Cathy McMorris Rodgers (R-Wash.), chair of the full Energy & Commerce Committee, noted that "by setting unattainable staffing requirements, I fear that the minimum staffing rule will force nursing homes to close or reduce the number of seniors served."
"And the Medicaid access rule's so-called '80/20 policy' will lead to home care agencies reducing the amount of care that they can provide," she continued, referencing a rule requiring home care agencies to pay 80% of the money collected for home care worker services directly to the workers rather than using it for administration or overhead.
Republicans have already introduced measures to counter the new regulations, which were announced last week H.R. 7513 would stop the nursing home staffing rules from going into effect, while H.R. 8114 would block the 80/20 pay rule for home care workers.
But Daniel Tsai, director of the Center for Medicaid and CHIP Services at the Centers for Medicare & Medicaid Services (CMS), said the nursing home rules made sense. "I don't think we need to choose between nursing home economics -- recognizing legitimate workforce challenges that we all need to work out creatively together -- and safe, dignified care," he said. "The rule upholds a standard but creates time [delays] and exceptions as well."
Tsai was referring to provisions that give the facilities several years to implement the staffing rules, and the fact that the rules include exceptions for nursing homes in several categories, including those located in workforce shortage areas.
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Note, This bill has important ramifications for our community. Many ICFs have reported problems hiring nursing staff and meeting staffing levels, and the above bill could be a harbinger of what the administration might be considering for ICFs.
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‘Breaking a Promise’: California Deficit Could Halt Raises for Disability Workers
By Vanessa G. Sánchez, KFF Health News, May 2, 2024
Families of people with intellectual and developmental disabilities say Gov. Gavin Newsom is reneging on a scheduled raise for the workers who care for their loved ones, and advocates warn of potential lawsuits if disability services become harder to get.
Citing California’s budget deficit, the Democratic governor wants to save around $613 million in state funds by delaying pay increases for a year for about 150,000 disability care workers. The state will forgo an additional $408 million in Medicaid reimbursements, reducing funding by over $1 billion.
Some lawmakers say this decision will increase staff turnover and vacancies, leaving thousands of children and adults with disabilities without critical services at home and in residential facilities. Disability advocates warn it could violate the Lanterman Act, California’s landmark law that says the state must provide services and resources to people with disabilities and their families.
Newsom is “breaking a promise,” said Felisa Strickland, 60, who has been searching for more than a year for a day program for her 23-year-old daughter, Lily, who has autism and cerebral palsy. “It’s creating a lot of physical and mental health problems for people, and it’s a lot of undue stress on aging parent caregivers like myself.”
Disability care workers, known as direct support professionals, provide daily, hands-on caregiving to help children and adults with intellectual and developmental disabilities, such as autism, cerebral palsy, and epilepsy, remain independent and integrated into their communities.
In California, more than 400,000 people with disabilities need accommodation, and this population, along with seniors, is increasing. It’s not clear how big the worker shortage is because the state hasn’t released workforce data. As the demand for these workers grows generally, experts predict a shortage of between 600,000 and 3.2 million direct care workers by 2030.
Advocates say California pays most providers from $16 to $20 an hour, which meets the state’s minimum wage but falls short of what some economists consider a living wage. In 2021, the state committed to raising wages after identifying a $1.8 billion gap between the rates received by nonprofits that contract with the state to provide care and the rates deemed adequate.
Thus far, the state has provided around half that total, most of which has gone to raising wages and benefits. Workers had been expecting one more increase, of $2-$4 an hour, in July, until Newsom proposed a delay.
Also, nonprofits say California has made it harder to compete for workers after raising wages in other service and health industries. Newsom approved a $20 minimum wage for fast-food workers that went into effect in April and he struck a deal last year with unions and hospitals to begin raising health care workers’ wages to a minimum of $25 an hour.
Ricardo Zegri said Taco Bell would pay him more than the $19 an hour he makes as a disability care worker in a supervisory position.
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California - Kids With Medically Complex Conditions Wait Months Or Years For Specialty Care
By Claudia Boyd-Barrett, California Health Report, via Disability Scoop, April 30, 2024
For the past five years — ever since her son, Marc, was diagnosed with cerebral palsy at 2 months old — Denise Williams of Adelanto has been trying to schedule doctor’s appointments. Week after week, she calls specialists, begs for referrals from Marc’s other doctors or sometimes just shows up at clinics, hoping the doctors there will agree to see her son.
Even when Williams can find a specialist who is willing to see her son and accepts his insurance, there’s a long wait for appointments. At times that’s meant Marc has gone without medication to manage his seizures or been unable to see a speech therapist to help him learn to talk. When he was 2, he had to wait two years to see the various specialists needed to approve the removal of his breathing tube.
“Always they kept postponing it or it was hard to get an appointment to see the doctor,” Williams said. “Or we would see the doctor and then we would need to get a clearance from other doctors, and then it’s hard to get those appointments and all the appointments are always months down the line.”
California has a severe shortage of pediatric specialist doctors. The state has only one pediatric medical toxicologist for all 8.7 million children in California, for example, and one child abuse specialist for every 258,000 children, according to data from The American Board of Pediatrics. The shortage spreads out over most disciplines, with one pediatric sleep medicine doctor for every 224,939 children, one sports medicine doctor for every 204,015 children and one hospice and palliative care doctor for every 190,709 children.
The severe shortfall puts medically fragile children at risk for worsening health and missed opportunities for life-changing treatment and support. Many families wait months — and in some cases a year or more — to get appointments. Sometimes they’re forced to drive halfway across the state to see a doctor. Sometimes by the time they see the specialist, the child’s condition has deteriorated or the window of opportunity for treatment that could halt or significantly reduce the progress of a disease or disorder has closed.
The shortage of specialists affects all children but is especially pronounced for children with disabilities and those from low-income families, because these children rely on the state’s health insurance program, Medi-Cal. Some specialists won’t accept the state health insurance plan and if the children’s families cannot afford to pay for private insurance or out-of-pocket care, then — despite having health coverage — they will not have access to doctors they need to see.
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Canada - Ontario Needs to Do More to Help Families with Violent, Autistic Children Suffering under Extreme Circumstances
Bu Cynthia Mulligan, Toronto City News, April 30, 2024
An Ontario family in crisis is pleading for help. They say their autistic child has exhibited violent tendencies, and they’re scared for him and for themselves.
“I don’t know how much longer…I can last to be honest,” said Stephanie Serenko. Her son Mason is he’s eight years old, and already weighs 180 pounds. “He’s just going to get bigger and stronger and it’s only going to be harder to handle.”
Mason has already broken his mother’s nose twice and sent his grandmother to hospital with a broken rib. Serenko says there is no help, and she fears one day he will unintentionally kill her.
“It’s dangerous to be with him alone, it’s hard, it’s really hard,” said Serenko.
For another Ontario family, Serenko’s worst fears have already been realized. Last year, an 18-year-old with Asperger’s, a form of autism, was charged with his mother’s death in the Ottawa area.
In that case, mother Lisa Sharpe was reportedly afraid of her son and had been struggling to get him help. The president of the Ontario Autism Coalition said families have been suffering under these extreme circumstances for years.
“We hear this story quite frequently in our community,” said Alina Cameron. “There’s never been a catch-all program to help families that have this level of need in Ontario.”
And yet the Ford government is spending more money on autism care than any other government in this province’s history, at $720 million this year.
There are currently an estimated 50,000 children on the waitlist for core services, enough to fill the Rogers Centre.
“They have doubled autism funding and tripled the waitlist for core services,” said Ontario NDP social services critic Monique Taylor. “If families are not getting core services at a young age, we’re seeing children like Mason now getting to age of 8 who have never had a day of service.”
Mason did not get early intervention, he was on the waitlist for services for five years and only started to receive funding in January.
Cameron said the most vulnerable children are not getting what they need.
A study by the American Centres for Disease Control last year found up to 26 per cent of autistic children have profound needs and are in danger of self-harm. That doesn’t mean all their behaviours are as extreme as Mason’s but his family is not alone.
“I hear from dozens [of families] and that’s the ones who reach out a lot are afraid, embarrassed [that] they can’t manage,” said Cameron.
“I think a crisis team would be fantastic … Right now, families in this position are resorting to desperate measures, to go emergency and sit down till someone helps them they will call police on their children.”
But Cameron is careful to give the Ford government some credit. “The extra money is fantastic, we just wish it was being used in a better way.”
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North Carolina - Meet Samantha R. Her Legal Victory May Improve Behavioral Care for Thousands in NC.
By Luciana Perez Uribe Guinassi, The Charlotte Observier, April 28, 2024
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About a decade ago, Dana and Tim Rhoney found themselves locked in battle with the state after struggling for years to get needed services for their daughter Samantha, who has a moving disorder and an intellectual disability.
“The only thing that we were asking for was just some additional service hours to have the workers to come in and give me relief in taking care of my daughter,” who is an “extreme self-abuser,” Dana told The News & Observer.
The Rhoneys would have caregivers come to their home through the N.C. Innovations Waiver, a backlogged state program that provides access to a wide range of behavioral health services for those who qualify.
But their regional mental health office — officially, Local Management Entity/Managed Care Organizations, which administer the waiver program — started cutting Samantha’s services, putting them all at risk, said the Rhoneys.
After two rejected appeals of denials of care through the state’s office of administrative hearings, the Rhoneys had to admit Samantha at the age of 27 into the J. Iverson Riddle Developmental Center, a state-operated developmental center in Morganton, they said. She was there for over seven years.
Lacking funds for an attorney, Tim said he had to represent Samantha’s interests in court both times. And both times, “There was not any talk about, ‘Hey, we’re going to give you the services to keep her in your home,’” he said.
These struggles led the Rhoneys to work with the legal advocacy group Disability Rights North Carolina, which filed a lawsuit in 2017 that became known as the Samantha R. case. Disability Rights NC argued that the failure to provide access to community- and home-based behavioral health services violated the rights of people with disabilities.
The state Department of Health and Human Services and Disability Rights NC are on the brink of entering into an agreement for the state to improve services. “Even though our daughter is very challenging, she also is very vibrant and social. She loves to be around other people when she’s doing well and not having her behaviors,” said Dana.
At the institute, “Samantha was not able to access community so her ability to enjoy life and prosper and flourish was being dampened,” she said.
Agreement details Lisa Grafstein, an attorney with Disability Rights and a Democratic senator representing Raleigh, told The News & Observer that Superior Court Judge Allen Baddour indicated that he would approve the consent order between the state and Disability Rights NC.
The agreement follows mediation between DHHS and Disability Rights NC after DHHS appealed an extensive order issued by Baddour in 2022.
Grafstein said the “appeal was a huge factor” in opting to go with mediation, citing delays and the possibility of a reversal of the 2022 ruling. “Rather than that possibly, we’d prefer to have a forward-looking remedy,” she said.
The other reality is that in cases like this — as in the long-running Leandro school funding case — where “there’s a court order saying that people’s rights are being violated and the state needs to take action that involves the expenditure of money, then that becomes more of a struggle,” Grafstein said. “So that’s, of course, in the background to all of this as well,” said Grafstein.
The General Assembly — which is tasked with passing the budget funding various departments and programs — is controlled by the GOP. According to a revenue forecast, the state is entering its short legislative session with a projected $1.4 billion surplus.
In the 2023 budget cycle, lawmakers invested $835 million in the mental health system. Of those funds, $176 million were used to raise Innovations waiver services rates so that providers would increase the wages of caregivers, known as direct support professionals. The General Assembly also provided $29 million to add 350 new Innovations slots, according to Summer Tonizzo, a spokesperson for DHHS.
But there are 17,000 people on the waitlist.
The 2022 order required the state to provide services to everyone on the list and to resolve the shortage of caregivers. It also required the state to cease new long-term admissions into institutional settings by 2028.
And while the new agreement does not eliminate the waiver waitlist, it sets a two-year period during which DHHS must work to transition more people into community-based services, including those on the waitlist and in institutional settings if they so wish.
DHHS is required to move at least 249 people out of institutions and into community-based settings by June 2027.
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More Opinions (Strongly Opposed) : | |
16,000 People with Disabilities are in State-Operated Institutions.
This is how experts say Health Care should Change.
By Michael Roppolo, CBS Reports, April 30, 2024
More than 16,000 people with intellectual and developmental disabilities, or IDD, are housed in institutions in the U.S., reports the Residential Information Systems Project. While that's significantly lower than nearly 200,000 people in the 1960s, there is more work to be done, says disability rights activist Rebecca Cokley.
Cokley, currently working as the disability rights program officer at the Ford Foundation, was born with achondroplasia, a common cause of dwarfism.
"We know that people with disabilities have a constitutional right…to live in the community," she told CBS News, pointing to the 1999 Supreme Court ruling in Olmstead v. L.C. "The promises made to make that transition to the community successful and possible for people with disabilities have never truly been fulfilled."
Patrick Cokley, her husband, is a senior program officer at the Robert Wood Johnson Foundation. Patrick has low vision and he and Rebecca are parents of children with disabilities.
"It is against the basic civil and human rights that we have established are a key part of American identity," he said. "Community living should be the rule, rather than the exception."
A 2011 review of 36 studies showed nearly 5,000 people with IDD found positive change after moving from large institutions to community living.
Institutions also serve as a reminder that when we create structures that are separate, they are rarely equal, a concept with roots in racism and slavery, the Cokleys say.
"That notion of dangerous paternalism has led the United States down a path... that certain people aren't fit to be in society," Rebecca said. "There has been a movement to lock those people away — to forget that those people exist — under the auspices, 'Well, it's better for them.'"
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Restraining Medicaid’s Budget-Busting Waivers
By Christopher Pope, Manhattan Institute, May 2, 2024
Executive Summary
For decades, federal officials have tried to let states make Medicaid more cost-effective by waiving some of the program’s standard terms and conditions. But waivers have not led to savings for taxpayers.
Instead, Medicaid spending has surged, from $205 billion in 2000 to $683 billion in 2019—with 75% of that spending now under a waiver.
Waivers provide no incentive for states to reduce the program’s overall expenditures, because waiver funding is contingent on states spending any purported savings that are generated. Not surprisingly, then, waivers have served as a one-way ratchet for increased Medicaid costs.
Increasingly, waivers have allowed states to claim federal matching funds for purposes that would not normally qualify, including housing, infrastructure, and even food benefits.
Most waivers are supposed to be budget-neutral, but that requirement has not proved to be an effective check on their use, because it is very difficult to objectively identify how much would have been spent without the waiver. Therefore, states can—and routinely do—inflate baseline costs in order to reap massive windfalls in federal matching funds.
Since waivers now account for the bulk of Medicaid spending, any fundamental reform of the program has to contend with their widespread abuse. This should be done by establishing a single unified spending cap—for both waiver and nonwaiver spending—for each state claiming waiver funds. This would allow federal officials to accurately set and enforce limits based on objectively comparable costs, while freeing states from the administrative burden and rigidity involved in futile attempts to police and evaluate idiosyncratic or overlapping waivers.
Reform Considerations
Because 75% of Medicaid spending is governed by §1115 or §1915 waivers, no reform could ensure that Medicaid as a whole is cost-effective and aligned with congressional priorities if it doesn’t touch waiver spending.
Indeed, waivers affect even the remaining 25% of Medicaid spending because the very existence of waivers influences the character of the program’s other expenditures. For instance, states may opt against cutting Medicaid costs if it allows them to receive higher payments from the federal government under waivers in the future.
Waivers were intended to improve cost-effectiveness in the purchase of medical services for the Medicaid program. But because they provide no incentive for states to reduce the program’s overall expenditures, they have not done anything to save money for federal taxpayers. Rather, they have served as a one-way ratchet for increased Medicaid costs.
Reform Proposal
The problem with Medicaid waivers is that they can be manipulated to inflate the total level of federal funding claimed by each state. This can be solved by capping the total level of federal funding that each state opting for waivers may claim from the federal budget, for all waiver and non-waiver expenditure alike.
Proposal: States adopting Medicaid waivers should be subject to a single overall cap on federal Medicaid funding.
This policy should preferably be enacted through legislation—but if that is not possible, it could be done by executive action that makes the cap a principle and condition of waiver approval.
Read the full editorial here.
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[Please click on blue link to view information about the bill]
VOR SUPPORTS:
S.4120 / H.R.,7994 - This bill would increase FMAP and offer grants to all DSPs and caregivers for the elderly and for people with I/DD and autism.
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.7267 - Disability Community Act of 2023 To amend title XIX of the Social Security Act to provide a temporary higher Federal medical assistance percentage for Federal expenditures under the Medicaid program that are associated with the cost of compliance with certain Federal regulations with respect to services furnished in certain intermediate care facilities or home and community-based services furnished to individuals with intellectual and developmental 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.
S.7302 - The Credit for Caregiving Act of 2024 Sen. Michael Bennett (D-CO) This bill would amend the Internal Revenue Code of 1986 to provide a nonrefundable credit for working family caregivers. In the case of an eligible caregiver, there shall be allowed as a credit against the tax imposed by this chapter for the taxable year an amount equal to 30 percent of the qualified expenses paid by the taxpayer during the taxable year to the extent that such expenses exceed $2,000. The tax credit is not to exceed $5,000 per year.
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.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:
H.R.8109 - To Make Permanent the Money Follows the Person Rebalancing Demonstration Program. MFP has been used to erode the ICF system. We call for congressional hearings, studies by the GAO, and audits by the Congressional Budget Office before any action should be taken to reauthorize this program.
S.533 / H.R.1263 Transformation to Competitive Employment Act
Sen. Bob Casey (D-PA) / Rep. Bobby Scott (D-VA 3) - This bill would support employers who wish to transform their facilities to provide only competitive integrated employment while forcing the elimination of programs that offer employment opportunities under Section 14(c) of the Fair Labor Standards Act. This bill would be unlikely to create a significant increase in employment for people with I/DD and autism, but would deprive over 120,000 individuals of the opportunity to work, develop skills, and be part of their community.
S. 1148 - The Guardianship Bill of Rights
Sen. Bob Casey (D-PA) - A bill to establish rights for people being considered for and in protective arrangements, including guardianships and conservatorships, or other arrangements, to provide decision supports. This bill would give ACL power to create a Guardianship Council and appropriate more money to P&As so they may encourage people to leave guardianships and move to Supported Decision Making. Dangerous over-reach in response to media hype on Britney Spears, et al.
S.1193 / H.R.2708 - The Latonya Reeves Freedom Act of 2023
Sen. Michael Bennett (D-CO) / Rep. Steve Cohen (D-TN) Allegedly written and strongly supported by ADAPt and other self-advocacy groups, this is a watered-down version of the Disability Integration Act. It is strongly biased against care in larger congregate facilities, and falls just short of seeking the elimination of ICFs.
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.
S.3118 - The HCBS Relief Act of 2023
Sen. Boby Casey (D-PA) A bill to provide for an emergency increase in Federal funding to State Medicaid programs for expenditures on home and community-based service. This bill, like others above, only provides funding for people receiving Long-Term Services and Supports through HCBS, denying any support for people in nursing homes or ICFs.
VOR supports increasing funding for people with I/DD, but we have concerns that the above bills, in their current form, would discriminate against people with the most severe I/DD and autism and jeopardize the higher-care facilities that are most appropriate to their needs.
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