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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 Annual Meeting
June 23, 2024
3 pm - 6 pm ET / 2 pm - 5 pm CT / 1 pm - 4 pm MT / Noon - 3 pm PT
3 pm - VOR's Annual Members Meeting
An open meeting of the VOR Board of Directors,
discussing the state of our organization and the direction of our advocacy work.
We will announce the outcome of the voting for directors,
present the 2024 VOICE Award,
and introduce
URSULA
The 2024 VOR Teddy Bear
4 pm - Guest Speakers
Joe Macbeth - President, National Association of Direct Support Professionals will share his insights on the workforce and their perspectives on caregiving, the need for safety, security, better training, and a career path,
and how VOR members can advocate to rebuild the DSP workforce.
Jackie Kancir - National Policy Director of the National Council on Severe Autism, Jackie is the mother of a young woman diagnosed with SYNGAP1, an outspoken advocate for severe autism, a frequent blogger at "What We Need Yesterday",
and the co-proprietor (with her daughter Jadyne) of Bunny Egg Acres.
5 pm - Reports from the States
VOR members will update one another on the state of I/DD and autism services in their states. Please join us for this yearly event.
We encourage members to submit their state reports to us at info@vor.net
Registration is requested, but not required.
To register, please click here
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Ursula is VOR's 2024 Teddy Bear, crafted by our very own Mary Reese.
And Ursula needs a new home...
Any person who makes a donation to VOR from May 30 to June 30, 2024
will be eligible
to "adopt" Ursula.
Ursula's new family will be announced in July.
If you would like to adopt Ursula,
please click here
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My Son is Profoundly Autistic. Please Don’t Say He’s Merely ‘Neurodiverse.’
Advocates are fighting to eliminate terminology that accurately describes my son and thousands of people like him — who can’t speak up for themselves.
By Whitney Ellenby, The Boston Globe, May 23, 2024
It was pure coincidence that I happened upon the bloody site. Hoping to surprise my son, I drove to his favorite walking trail, along a lakefront, where I caught sight of police officers in a tense confrontation. Three officers stood side by side in an impenetrable wall while instructing someone splayed out and writhing on the ground. I hope Zack doesn’t get distracted by this scene, I thought.
As I neared the trail, I saw Zack’s aide, slouched inside her car, fully absorbed in texting. She was supposed to remain beside him at all times, but he was not with her. I called out to her, “Where’s Zack?” as my throat tightened with the realization he was nowhere in sight. I began sprinting toward the police officers — only to discover with mounting horror that Zack was the scene they were dealing with.
He was ravaging his forearms with deep, mutilating bites, thrashing angrily on the ground, and then rising to charge at the officers, who patiently but sternly reminded him to “stay seated” and repeated “Don’t panic, you’re not in trouble.” Breaking into the scene, I began a frantic avalanche of contrition. “I’m so sorry, I don’t know what triggered this —” But I was abruptly cut off by an officer who stated calmly, “Yes, we understand who he is and that he’s petrified.”
Somewhere during his sojourn along the lake, Zack, who was 20 years old at the time, had abruptly sat down too close to a woman seated on a bench, who gingerly told him to put on a COVID mask — and Zack bit her on the shoulder for what he perceived as a reprimand. The woman immediately summoned the police, not in anger but in compassion, realizing this young man was seriously disabled and apparently unattended.
“He’s not in trouble, the woman’s not pressing charges,” the officer assured me. “We’ve been trying to get him to recount a phone number of someone we could contact —” He halted, spying a robust purple bruise on my calf and deep bite marks encrusted with dried blood along my arms. His tone turned solemn. “I can only imagine what you’ve been through. I do understand.”
I stood in stunned silence. I was not prepared for them to be prepared. It had been 45 minutes since they first gathered around Zack with no identifying information, 45 minutes during which his very safety hinged not only on the instincts of a benevolent stranger whom he assaulted but on a shared understanding by all involved of his clinical identity — that Zack is profoundly autistic.
What’s remarkable about Zack’s behavior is how unremarkable it is. Autism has been on an inexplicable rise with no signs of a plateau. The Centers for Disease Control and Prevention estimates that 1 in every 36 children born today has autism, and 1 in every 4 of those will have “profound autism,” a clinical distinction for those with much higher needs than the more verbally and intellectually able people who also have an autism diagnosis. Individuals like Zack with profound autism have minimal or no expressive language and require round-the-clock care to assist with daily living activities and safeguard them from extreme behaviors such as self-injury, the destruction of property, and “elopement” — the term for running or wandering away from caregivers or secure locations.
But while parents like me struggle to manage our children’s dangerous impulses, a powerful cultural movement has taken hold that forbids open discussion of profound autism and its manifestations. Advocates for “neurodiversity” are seeking to eliminate the term “profound autism” — on the grounds, they say, that it makes it seem as if autism is always an affliction. And now they are bullying doctors, researchers, lawmakers, and the rest of society into ignoring truths about Zack’s disorder that define his life.
Sanitizing Zack’s diagnosis and intense needs is dangerous. That day out on the lakefront trail, my son’s safety turned on the officers’ ability to decode from his conspicuous behaviors that he has profound autism in particular. They told me they realized that Zack’s refusal to identify himself to them despite repeated requests stemmed from an inability to articulate salient information in a moment of acute stress. They employed a measured response to his rage by speaking in succinct, assertive phrases, repeating reassurances, and maintaining a physical distance. If they hadn’t had such precise training, which depends on recognizing precise clinical criteria rather than employing general descriptors such as “neurodiverse,” the scenario could have gone very differently — with his arrest, forcible restraint, and even suffocation and death.
The intimidation campaign
I embrace many of neurodiversity’s fundamental tenets, especially the idea that people with intellectual disabilities should be broadly accepted and included in society.
I’ve staked my career on this principle — I used to work in the US Department of Justice as a disability rights attorney. I witnessed firsthand the exclusion of people with physical and cognitive disabilities from the rituals of daily life most other people take for granted. And I believe parents and professionals must aspire to discern a child’s authentic needs rather than superimpose our own preferences on them or force them into compliant molds of “normal.” Our children do not need to be “typical” to thrive in a society designed for its vast majority, nor is that an attainable goal.
But the concept of neurodiversity is going into dangerous territory if diagnostic distinctions across the spectrum are now considered archaic and bigoted.
As neurodiversity advocates denounce any framing of autism as a disability that requires medical intervention, they demand more support systems for people with autism, such as independent living “that honors authentic forms of human diversity.” Groups like the Autistic Self-Advocacy Network, people who identify on social media as #ActuallyAutistic, and parent activists insist that there is no such thing as a “normal” brain, only relative differences that render all humans “differently abled.”
To them, frank discussions about profound autism give a distorted image of people like Zack as unpredictable, cognitively limited, and presenting more behavioral challenges than the general population. Except the image is not distorted. While it’s painful to accept, these descriptors are accurate. Over the course of a single day, Zack, who is now 23, might furiously pummel his head in rage, slam his body into a wall, and bite me hard enough to draw blood.
The neurodiversity advocates — whose members are distinguished precisely by their ability to advocate for themselves, as Zack cannot — are not illuminating the complexity of autism; they are castigating into submission anyone who dares to deviate from their accepted language.
I hope Congress hears parents like me
The Autism CARES Act, which allocates NIH-funded research and services, sunsets on Sept. 30. Fierce debates are already underway about what Congress should do when it reauthorizes this funding. On one side stand autistic self-advocates who rally against any research not explicitly approved by them. On the other are parents who are desperate for clinical advancements but are so engulfed in the daily ordeal of managing their profoundly autistic children’s aggression and property destruction that they are largely incapable of organizing. The few dedicated parents calling for NIH to set aside funding to specifically address “profound autism” are vastly outnumbered by neurodiverse advocates who seek to block the act from passing if such “stigmatizing” language is included.
The loudest voices seek to abolish all spending on autism medical research and replace it with select services, such as workforce initiatives, that assist only those with milder autism. It’s here that the idea of neurodiversity poses the greatest threat — a movement that celebrates autism in all its forms, and depicts even the most severe afflictions as “merely a difference,” vehemently opposes any investigation into autism’s causes as ableist.
The truth is that we still don’t know what explains the steep rise in autism — perhaps it’s the product of widespread environmental contaminants altering our children’s brains — and this increase needs urgent attention. As these children age, state programs already strained by the deluge of adults needing lifelong services threaten to collapse entirely. Capitulating to self-advocates’ demands amid a global proliferation of one of the gravest disorders of our time is not only morally incoherent but medical malpractice.
In the natural course of events, every profoundly autistic child will eventually be orphaned by the most qualified and dedicated caretakers he’s ever known — his parents. Absent meticulous advance planning and abundant resources, that child will be automatically transitioned by the state to placement in a residential living arrangement. For that child to be placed appropriately depends entirely upon having accurate clinical information about the intensity of his needs, taking into account the possibility of physical aggression, self-injury, elopement, property destruction, seizures, and other overlapping medical needs. I’m confident that if a person facing homelessness and a precariously uncertain future were asked whether he values a safe residential arrangement over semantics that obscure his diagnosis, he would choose the former.
For the record, any language that contorts or constricts the full scope of Zack’s identity is something I find deeply offensive. Zack has struggled with innumerable obstacles and heartbreak in navigating a world that does not come naturally to him, and his competence is strengthening to this day. Blurring his identity under the indistinct banner of “neurodiverse” erases Zack’s lived history — all that he has endured and overcome to get here.
Read the full editorial here
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Autistic People Three Times More Likely to Develop Parkinson’s-Like Symptoms
By Miryam Naddaf, Nature, May 28, 2024
A study of quarter of a million people with autism, intellectual disabilities or both has found that their risk of developing symptoms associated with Parkinson’s disease is three times that in the general population.
The study is the largest of its kind, and warrants further investigation into the links between these conditions, researchers say. The findings were presented at the annual meeting of the International Society for Autism Research in Melbourne, Australia, on 16 May, and have not yet been peer reviewed.
The results are “a big deal as we think about planning and what we should be screening or looking for as autistic people age”, says study co-author Gregory Wallace, a developmental neuropsychologist at George Washington University in Washington DC.
Robert Hendren, a psychiatrist at the University of California, San Francisco, agrees. “The better prepared people can be, then the better chance there is of minimizing the effects, or maybe even eliminating them,” he says.
Changing understanding
There have been few studies on health effects experienced by autistic adults as they age. When autism was first described in the 1940s, “it was seen as a disorder of infants”, says Joseph Piven, a psychiatrist at the University of North Carolina at Chapel Hill.
Autism did not become a distinct diagnosis until the 1970s, and the criteria for characterizing it have been changed several times since then. These changes — in addition to the difficulty of recruiting ageing participants into studies — have made it difficult to follow individuals over long term, Wallace says.
“Part of the reason we know so little about this, and why this is in its infancy, is because we know so little more broadly about ageing and autism,” says Wallace.
Previous studies have suggested that autistic people have disproportionately high rates of parkinsonism — symptoms common in Parkinson’s disease, including tremors, sudden freezing while walking and difficulty holding a posture — compared with the general population. One of the first studies to investigate this, published in 2015 by Piven and his colleagues. looked at 37 adults with autism and found that 12 had parkinsonism. But small sample sizes have undermined the reliability of findings.
“Many autistic people, when they’re younger, have motoric symptoms, or issues with motor functioning,” says Wallace. “We want to figure out if it is a parkinsonism, a broader array of these motoric features, or is it a neurodegenerative process,” he adds.
Genetic studies have also found that autism is linked to mutations in the PARK2 gene, which is also associated with Parkinson’s disease.
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Section 504 of the Rehabilitation Act of 1973 - Part 84 Final Rule Fact Sheet Now Available
Per the U.S. Department of Health and Human Services, via RCPA, May 24, 2024
The Department of Health and Human Services (HHS) Office for Civil Rights (OCR) has issued a Final Rule to advance equity and bolster protections for people with disabilities. The final rule, Discrimination on the Basis of Disability in Health and Human Service Programs or Activities, updates, modernizes, clarifies, and strengthens the implementing regulation for Section 504 of the Rehabilitation Act of 1973. Section 504 prohibits discrimination on the basis of disability in programs and activities that receive Federal financial assistance.
The historic rule provides robust civil rights protections for people with disabilities in federally funded health and human services programs, such as hospitals, health care providers participating in CHIP and Medicaid programs, state and local human or social service agencies, and nursing homes. Reflecting on over 50 years of advocacy by the disability community, it advances the promise of the Rehabilitation Act and helps to ensure that people with disabilities are not subjected to discrimination in any program or activity receiving funding from HHS. This final rule is consistent with Section 504 statutory text, congressional intent, legal precedent, and the Biden-Harris Administration’s commitment to advancing equity and civil rights.
Link to article
Link to HHS - Section 504 site
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Oklahoma - Troubled Enid Center for People with Developmental Disabilities went Years without a State Advocate on Site Full-Time
By Kayla Branch, The Frontier, May 22
No state advocate worked on site full-time to represent clients and investigate abuse at an Enid center for people with developmental disabilities where facility staff allegedly beat and choked residents last year.
The Oklahoma Human Services’ Office of Client Advocacy investigates complaints of abuse and neglect at the 52-bed Robert M. Greer Center in Enid. But for more than seven years, the state advocate assigned to Greer clients didn’t work in-person on the campus full-time.
At least eight former Greer staff members have been criminally charged since November on allegations of caretaker abuse and are awaiting court hearings. There were reports of abuse dating back to at least 2021 at Greer, but State Department of Health investigators didn’t have enough evidence to prove abuse or neglect occurred, according to state surveys. Some injuries to clients weren’t reported to the state at all, or reports were delayed by days or weeks, according to state surveyors and court testimony. Police and state officials have said they are investigating whether some Greer staff refused to cooperate with abuse investigations or provided inaccurate information.
For 16 years, the Office of Client Advocacy maintained an office staffed with a full-time advocate to investigate client grievances and concerns on the campus that was home to the Greer Center and the former Northern Oklahoma Resource Center, another facility serving individuals with developmental disabilities, a spokeswoman for the Oklahoma Human Services said. The Resource Center buildings shut down in 2016, and there was limited office space inside of Greer, the agency said. The advocacy office also closed in 2016.
The agency said in an emailed statement to The Frontier that a state advocate still had the sole job responsibility of advocating for Greer clients and “maintained a physical presence at the facility no less than two to three days per week.”
“These efforts are motivated by no reason other than to protect these individuals to the best of the agency’s ability within the resources available to it,” a statement reads.
Oklahoma Human Services said the agency is only required to maintain offices at state-run facilities like the former Northern Oklahoma Resource Center. Since the state contracts with the private, for-profit company Liberty of Oklahoma Corporation to manage Greer, the agency says it did not have to keep the advocacy office open after the other center closed. A Liberty of Oklahoma spokeswoman directed questions to Oklahoma Human Services.
State rules last revised in 2017 say the Office of Client Advocacy maintained an office at the Greer Center. But the agency says the requirement does not apply because the Greer Center is no longer a state-operated facility.
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Related Article
Further information, reports of a death from abuse at Greer Center
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Problems Continue at Illinois Forensic ICF
Illinois - Camera Catches Worker at State Facility for Developmentally Disabled Beating a Batient
By Beth Hundsdorfer, The Chicago Sun-Times, May 27, 2024
Cameras in common areas at Choate Mental Health and Developmental Center were supposed to make the troubled southern Illinois facility safer for the approximately 200 people with developmental disabilities who live there.
But a camera caught a mental health technician grab a patient by the shirt in mid-February, throw him to the floor and punch him in the stomach, according to court records.
The worker has since been indicted. But for 11 days after the incident, he continued to work on the same unit without restriction until an anonymous letter prompted an investigator to look for the video.
During that time, no one at the facility, including any witnesses, reported the abuse, records show.
In March, Gov. J.B. Pritzker’s administration announced plans to install cameras in the wake of an investigation by Capitol News Illinois and ProPublica that unearthed a culture of cruelty, abuse, neglect and cover-ups at Choate.
The administration also announced it would move 123 people from the facility. So far, 34 Choate residents have been moved, most to other state-run developmental centers.
The cameras were supposed to deter employees from mistreating patients and make it possible to quickly dispel false accusations.
But to protect worker rights and patient privacy, the videos aren’t monitored and can be reviewed only if there’s an accusation of abuse or neglect.
Related:
The anonymous letter that sparked the investigation accused mental health technician John Curtis “Curt” Spaulding of attacking a patient Feb. 12. That led investigators to check the video.
But records show it took until Feb. 23 for Choate security to review the video. Then, within hours, Spaulding resigned.
In an interview, Spaulding said he didn’t abuse anyone and that he resigned because he was tired of poor working conditions and difficult schedules at Choate.
“I was better to those guys than 90% of the people who work there,” said Spaulding, who worked at Choate since 2015. “But I was never one to let them walk all over me.”
Another employee, Shushya Salley, was put on paid administrative leave. Though her involvement isn’t clear, the form referring the case to the Illinois State Police from the Illinois Department of Human Services’ inspector general’s office noted there were witnesses. Anyone who witnessed the abuse would have been required to report it within four hours. Salley didn’t respond to requests for comment.
The inspector general’s office has investigated Spaulding five times in the past three years, records show. None of the prior accusations was substantiated.
A grand jury has now indicted Spaulding on a felony charge of aggravated battery and also a charge of misdemeanor battery.
Of more than 20 employees identified as having been charged with felonies on suspicion of abusing patients at Choate or covering it up during the news organizations’ investigation, two have been convicted of a felony. One later was allowed to withdraw his plea and to plead guilty to a reduced, misdemeanor charge. None of the workers has received prison time, even those who caused serious injuries.
Read the full article here
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Disability Workers call on Gov. Newsom to Reinstate Pay Raises in his Budget Proposal
By Kelly Hessedal, CBS-8 News, May 31, 2024
A crowd of about 200 people lined State Street outside of the California State Administration Building Friday, calling on Governor Gavin Newsom to reinstate pay raises for thousands of disability workers.
To balance the budget, the governor proposes delaying pay raises for them until 2025 as a way to save about $600 million dollars.
"This population is really not heard, they're not seen as voters, even though they do vote and can vote," said Edward Hershey, CEO of Home of Guiding Hands. His daughter has intellectual and developmental disabilities.
"The system is set up to really silence them," he said. "During the years of the institute, we used to put them away in buildings and ignore them and I feel the same is happening now with the budget cuts we've seen over decades. This latest one, we're not listening to this population."
Hershey said on average, workers who care for disabled people make around $18-$19 an hour.
He said last month, his organization turned away 260 people because they just don't have the staff to care for them. He said currently they have 120 openings.
According to Hershey, that means people aren't able to go to doctor's appointments or even do things like go to the grocery store because they don't have the support they need.
The governor's budget proposal hasn't been finalized yet.
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West Virginia - Special Session Ends with Disabilities Funding Approval Amid House, Senate Tension
By Anna Saunders, WCHS - TV News, May 22, 2023
The special session has now officially come to end. All requested bills from Gov. Jim Justice passed including providing extra funding to the Department of Health and the Department of Human Services.
This will come in the form of new reserve funds following cuts made to programs for people with disabilities in March. However, that bill specifically created tension and back and forth in the final hours between the House and Senate.
On the final day, the Senate decided instead of taking messages from the House and taking up their rejection of the Senate's version of the bill, they would instead adjourn sine die. This left the House with only one option if they wanted it to pass, and that was to take up the Senate bill they originally rejected and pass it as is, which is what they ended up doing.
“My interpretation was they took their ball and they went home," Del. Amy Summers, R-Taylor, said. "I think the process is better is if we would have had a conference and worked this out between us. This just causes animosity and unnecessary angst and for the people to worry and not know what’s going on. I think we need to honor the process and do it the right way.”
The tensions were over Senate Bill 1001 which would create a $183 million reserve fund for the Department of Human Services and a $5 million reserve for the Department of Health. During regular session in March, programs from health and waiver programs under DoHS saw cuts on the final day of the legislative session including the Intellectual and Developmental Disabilities waiver (I/DD).
The cuts to I/DD became the rallying cry for this special session as a rally was held at the Capitol last month calling on the legislature to restore these funds that help families provide the needed care at home for loved ones with disabilities. It was the first item on the special session call.
One of the issues with the waiver program right now, aside from a growing waitlist, is that providers that help these families are struggling to make ends meet and pay their employees a livable wage. This makes it harder on families seeking care like respite.
Because the reserve funds, as written in the legislation, do not come with directives on how to spend, Summers put in an amendment that would have directed money in the reserve fund to go toward increasing provider rates.
She argued that the departments have had funding discrepancies in the past where they have not spent allotted funds on their intended use and that this would at least give some form of directive. That amendment was removed by the Senate on Tuesday as the Senate's position was that the funding is already there for that and this directive could cause cuts in other places.
“To call us heartless and things like that, it’s false," Senate President Craig Blair, R-Berkeley, said. "It’s uneducated. They’re unaware of what’s going on because things were even worse before. We’re actually being able to target effectively where the money goes. It’s working.”
Senate Finance Chair Eric Tarr, R-Putnam, said this bill comes with the requirement that the departments present their spending of the reserve funding to the Joint Committee on Government and Finance monthly which is where the added transparency piece is, he said. Though it does not specifically lay out how the funding can be used, Tarr said, the joint committee will be able to catch any forms of misspending or moving money around as he said the DoHS has done in the past.
Tarr said with declining Medicaid enrollment, he expects the money that was already in the budget even with the cuts would be enough to fully fund the waiver programs as is. He said to calm concerns the reserves are just a backup.
“It is trending down," he said of Medicaid enrollment. "By the time we get into fiscal year 2025 it’s going to be less than 514,000 [people]. There’s money there. With what we budget the budget we passed in regular session, the money is there. What this does is it says, 'Alright, if it’s not then here’s a reserve thing that we can go in and fund those things.'"
The reserve funding in a one-time funding allocation that will expire in March of next year.
Continued
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[Please click on blue link to view information about the bill]
VOR SUPPORTS:
S.4120 / H.R.,7994 - The Long-term Care Workforce Support Act - This bill would increase FMAP and offer grants to all DSPs and caregivers for the elderly and for people with I/DD and autism. VOR worked with members of the Senate Aging and Diability Policy Committee and other peer organizations to improve this bill from its original form. It is not perfect, and it contains one major flaw to which we continue to object (the permanent reauthorization of the Money Follows the Person Rebalancing Demonstration Program) but we will continue to work to improve this bill and remove its flaws.
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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Please share this offer with your loved one's
Direct Support Professionals!
VOR ❤️s OUR
DIRECT SUPPORT PROFESSIONALS!
Our loved ones' caregivers are essential to their health, safety, and happiness.
In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to receive our newsletter.
We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.
If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at
info@vor.net
with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.
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What's Happening In Your Community?
Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?
Contact us at info@vor.net
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836 South Arlington Heights Road #351
Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
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FACEBOOK: /VOR ----- TWITTER: @VOR_NET ----- YouTube
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