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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The State of Services for Individuals with
Intellectual and Developmental Disabilities and Autism
December, 2024
As we close out this year, let's pause to take a look at the state of services being offered to people with I/DD and autism, especially those on the severe/profound end of the spectrum, and those whose challenges include severe mental illnesses and chronic, complex medical conditions.
As has been the case for the last several decades, Disability Policies in the United States have centered around integration into the non-disabled community. This is a great policy for those with mild to moderate disabilities, but these policies continue to marginalize those with more severe and profound disabilities.
While our families are constantly being told that "everyone does better in the community", the articles in this week's newsletter again show many of the faults within that community. But most problems span all aspects of the DD System, whether the individual resides at home with family caregivers, in a group home, or in a larger congregate setting.
The greatest challenge we all face is the shortage of DSPs, and the lack of will on the part of our federal and state governments to take bold action to fix this crisis. We need the President, Congress, federal regulatory agencies, and state governing bodies, to raise the wages, increase training, create career paths, and recognize these individuals as health care professionals. They deserve this. Our loved ones with I/DD and autism, and people in the aging community deserve this. And the families who care about these individuals deserve this.
Another challenge is "the cliff". Why do programs for people with ID/A lapse at age 22? Why is there no continuity? These are not age-related circumstances. They are lifetime conditions. People with ID/A should be able to transition into the appropriate care and engage in opportunities appropriate to their stage in their life-cycle. People change, throughout their lives, whether they have disabilities or not. The system for people with ID/A needs to be as flexible as the system that oversees care for non-disabled individuals.
For years, states have been abandoning their responsibility to provide services, handing the matter of caring for people with ID/A over to a private, for-profit industry. The fact that our government fails to understand our challenges, and to address the need for a strong DSP workforce and life-cycle services ultimately leads to an increase in incidents of abuse and neglect. There is no greater threat to our loved ones. Can it be prevented? No. Can it be decreased by better regulation and oversight? Definitely. We need our local, state, and federal governing bodies to do better.
But the most tragic of all our challenges is the misunderstanding of people with I/DD and autism, not only by the non-disabled community, but especially within the ID/A community. Every person with intellectual disabilities, no matter where on the spectrum, every parent, and every sibling deserves respect and understanding. No one person can truly understand the challenges of another - the exact nature of their's disability, their circumstances, their family's circumstances, the options that are available to them, often determined by the state in which they reside, and their unique balance of needs and aspirations.
As we approach the New Year, VOR's hope is that the members of our DD community resolve to support one another, and to respect the choices that each another makes in their journey, even if those choices differ from those we ourselves would make.
Thank you.
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VOR's Winter Networking Meeting
January 27, 2025
4 pm Eastern / 3 pm Central / 2 pm Mountain / 1 pm Pacific
On Zoom
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The topic for this meeting will be
Addressing the challenges and opportunities of the Second Trump Administration
and the 119th Congress
You must be a member of VOR to attend this meeting.
To register,
Please Click Here
You will receive confirmation of your registration.
A link to the Zoom meeting will be sent to you shortly before the event.
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Please join us on Capitol Hill
May 12-14, 2025
VOR's Annual Legislative Initiative
Washington, D.C.
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We will meet in D.C. on May 12th - 14th
for meetings with
Congressional Staff and Federal Regulatory Agencies
to discuss issues of critical importance to
individuals with severe or profound I/DD and autism
and their families.
This event is open to all members of VOR
Please register early, to reserve your spot
Registration is free until February 1, 2025
So please register now!
To register for the Legislative Initiative,
Please Click Here
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Support Sheltered Workshops & 14(c) Programs | |
The Department of Labor's Wage & Hour Division has issued a proposed role in the Federal Register that would phase out the use of Commensurate Wages under Section 14(c) of the Fair Labor Standards Act.
There is a comment period from now until January 17th, and we ask our members to send comments to the Wage & Hour Division to express your opposition to this rule and your support of 14(c) provisions for people with intellectual disabilities and autism.
To download the document from VOR's website, please click here
To post a comment opposing this rule, please click here
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Congressman Glenn Grothman Enters bill to require the Secretary of Labor to withdraw the proposed rule to eliminate 14(c) programs
On December 16, 2024, Congressman Grothman (R-WI) introduced H.R.10427, to the House Committee on Education and the Workforce.
Read the bill here
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Opinion: Why is the Biden Administration Targeting the Severely Disabled?
By Amy S.F. Lutz, City Journal, December 19, 2024
On December 3, the Department of Labor issued a Notice of Proposed Rulemaking that, if finalized, would eliminate 14(c), a provision of the Fair Labor Standards Act that allows some employers—mostly non-profit service providers—to pay some intellectually disabled employees a subminimum wage, based on specified metrics of productivity.
Participants at 14(c) programs perform diverse jobs, including recycling, shredding, and piecework, such as assembling kits or packaging items. Program administrators often break tasks into multiple steps to allow those with significant cognitive impairments to contribute. Wages are determined by a formula, which compares a participant’s production rate to that of nondisabled workers. If nondisabled workers can assemble 100 widgets in an hour, and the prevailing hourly wage for that labor in that geographic area is $15, for example, a 14(c) participant who completes 25 widgets in the same time period would earn $3.75 per hour. Since skills can increase with practice, participants are re-tested every six months to ensure that their wages accurately reflect their capabilities. The agencies that host these programs not only provide training and supervision, but often take a holistic approach, offering onsite activities and community outings for interested participants.
That the department proposed to eliminate 14(c) was no surprise. After it announced its “comprehensive review” in September 2023, people on both sides of the issue expected the Biden administration to side with disability rights advocates, who have long attacked the subminimum wage as “unfair, inequitable, and inhumane.” Activist pressure has already prompted 16 states to close their 14(c) programs, with Illinois poised to be the 17th.
What is more surprising is the timing. The notice was anticipated in September, but its December publication, and the subsequently required 45-day comment period, means that the decision to finalize the proposed rule will fall to the Trump administration. Not only have prominent Trump allies like Congresswoman Elise Stefanik publicly defended 14(c), but Republican senators Tom Cotton and John Boozman submitted a letter to the DOL’s acting secretary, advising her that the department lacks the authority to alter the program. “Any changes to the 14(c) certificate program rests with Congress and not DOL,” the senators wrote, before praising the program for “provid[ing] many vulnerable Americans with a sense of accomplishment and provid[ing] their families and caretakers with time to complete activities necessary for the functioning of their households.”
As a lifelong Democrat, I never thought I’d agree with Tom Cotton about much of anything. But he’s right. When this issue is debated up in the ether, far removed from real people with disabilities, it mostly follows partisan lines. Democrats endorse disability rights advocates’ demand to close 14(c) programs, and Republicans push back. But on the ground, actual adults with significant disabilities and their families strongly support 14(c), no matter their political affiliation. When the U.S. Commission on Civil Rights examined whether the subminimum wage should be eliminated in 2020, for example, almost all of the public comments (98 percent) backed preserving the program. Similarly, when the DOL held listening sessions in fall of 2023, virtually all the parents and siblings who spoke implored the department not to end 14(c), citing the safe and structured environment, meaningful activity, and community of peers for their severely disabled loved ones that the program provides.
I am also a parent, but my 25-year-old profoundly autistic son Jonah is too impaired ever to work in a 14(c) program. I write about, research, and advocate on this issue because it exposes the ways in which America’s disability-service system, at activists’ behest, increasingly fails to meet the needs of the people it is intended to support."
Continued
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Again, please submit a comment in support of 14(c) programs to the DOL website!
You need only write a line or two, or much more if you wish. But we need the DOL to see support for these programs, and support for individuals and families to be able to make their own choices from a wide range of options - not to have those choices eliminated by the preferences of others in our community or by the governing bodies that should be ensuring that a wide range of opportunities are available, well-funded, and provided with appropriate oversight.
Submit Your Comment Here
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Bonus Article
Australia - Time to give Supported Employment the Pub Test
By Phil Hayes-Brown, Hello Leaders Australia, December 13, 2024
We’ve all seen the headlines calling for closure of supported disability enterprises – “$4 an hour Sweatshop!” and heard passionate advocates, often with disabilities themselves, calling for these workplaces to be closed, some claiming they are akin to modern slavery. These claims keep coming.
So how can it be that the Disability Royal Commission was split on this subject, Australia’s Fair Work Commission believes these workplaces are important and I personally am proud to lead an agency offering these jobs to 250 adults in Melbourne who live with intellectual disabilities?
I invite you to join me on a journey to unpack the full story of supported employment and see if it passes that iconic Australian measure, the pub test. Let’s begin.
First, we need to talk about the Disability Support Pension, the DSP. To qualify for the DSP someone needs to be assessed by Services Australia under a range of criteria including age (must be 16 or above) and a list of medical and non-medical rules which are all about assessing someone’s ability to work.
One of the qualifying criteria is: you have an intellectual disability with an IQ of less than 70.
As reference, my adult daughter qualifies for a DSP on this ground and all of Wallara’s supported employees receive the DSP.
At its core then, the DSP ($1150 a fortnight , $575 per week or $30K per annum and not taxable) is a work income supplement.
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The Workforce Crisis - The Provider Crises: | |
The State of America's Direct Support Workforce Crisis 2024
For the fifth consecutive year, ANCOR has conducted a survey to measure the impact of this workforce crisis on both providers and the people they support. The results of the 2024 survey are a sobering revelation of a system of care in peril.
Key findings from the State of America’s Direct Support Workforce Crisis 2024 include:
- 90% experienced moderate or severe staffing challenges in the past year.
- 69% reported turning away new referrals.
- 39% were discontinuing programs/services.
- 64% intended to delay the launch of new programs.
- 34% were considering further cuts to programs if recruitment and retention challenges failed to subside.
- 45% were experiencing more frequent reportable incidents.
- 57% of case managers struggled to connect people with services.
- 57% reported delivering services in areas where few or no other options exist.
Download the report here
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Reassessing Support for Direct Care Staff: A Call to Action Amid Legal Reckoning
By Kevin King, The Imprint, December 16, 2024
In recent years, a surge of lawsuits has exposed systemic failures in care settings for vulnerable youth. Residential programs, group homes and child crisis centers across the U.S. are being confronted with past abuses of children in their care. High-profile cases, such as those against Universal Health Services (UHS), which was hit with $895 million in damages this year for child sexual abuse allegations, underscore the urgent need for reform in the training and supervision of direct care staff. These lawsuits not only highlight past injustices, but also present a critical moment for reevaluating our approach to youth care.
As organizations grapple with the fallout from these lawsuits, it becomes increasingly imperative to examine how insufficient training and oversight have contributed to these dire circumstances. Many direct care staff enter their roles motivated to help, yet they often lack the comprehensive training necessary to navigate the complexities of working with at-risk populations.
This gap in training is compounded by high turnover rates and understaffing, which further reduce opportunities for ongoing education and professional development. Without proper guidance, these workers are left to navigate challenging and often volatile situations with inadequate tools, leading to increased risk of errors, mishandling of situations and in some cases, harm to both the individuals in care and the staff themselves. The lack of investment in thorough, scenario-based training and continuous oversight ultimately compromises the quality of care and exposes organizations to significant legal and reputational risks.
Historically, training programs have focused more on operational tasks than on the critical elements of trauma-informed care. While some states mandate as little as 40 hours of training for new hires, this training frequently falls short of addressing the nuances involved in caring for young people with traumatic backgrounds. For instance, staff may be taught basic protocols but receive little guidance on understanding the neurobiological impacts of trauma, dealing with their own countertransference or recognizing implicit biases that can affect their interactions with youth.
The ongoing lawsuits serve as a stark reminder that the consequences of neglecting staff training can be dire. Inadequate training leaves staff ill-equipped to manage challenging behaviors and recognize the signs of trauma, potentially allowing “bad faith actors” to operate unchecked.
When staff members are not properly trained to recognize and address harmful behaviors, they may inadvertently overlook or misinterpret signs of predatory actions by bad faith actors. Without the necessary skills and knowledge, employees might fail to identify subtle warning signs of manipulation, coercion or abuse, allowing these individuals to exploit vulnerable populations. Predatory behavior can often be masked by charm, manipulation or deceit, making it all the more difficult for untrained staff to discern. In the absence of clear protocols and adequate education, there is an increased risk that these harmful behaviors will go unnoticed or unaddressed, putting both staff and those they serve at greater risk. This creates an environment where trust is eroded, and safety is compromised.
Continued
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New York to Pay $10 Million in Woman’s Death After Abuse in Group Home
The state in 2019 paid a $2 million abuse settlement. In retaliation, staff members withheld the victim’s medicine, and she died in a hospital.
By Hurubie Meko and Benjamin Weiser, The New York Times, December 10, 2024
In 2019, New York agreed to pay $2 million each to the families of three developmentally disabled residents of a group home who had been beaten, smacked and humiliated by workers who called the facility the “Bronx Zoo.”
But the mistreatment did not end for one of those residents, a 52-year-old woman identified only as Z.O., according to court papers. Workers retaliated against Z.O. by withholding her daily constipation medicine, according to court papers, and she eventually died in a hospital from complications of massive bowel obstruction.
Now, five years after the original settlement, the state will pay Z.O.’s family an additional $10 million.
“The state failed this woman in every possible way,” said Ilann M. Maazel, a lawyer who brought the lawsuits over the treatment of the woman, in a news release. “Staff abused and neglected her and then, as if that were not enough, they killed her.”
For decades, the state has known about abuses against disabled and mentally ill New Yorkers at facilities responsible for caring for them, but has repeatedly failed to stem the problem. In 2013, then Gov. Andrew M. Cuomo created the Justice Center for the Protection of People With Special Needs in response to reporting by The New York Times that found rampant abuse at the homes, insufficient oversight and minimal penalties for wrongdoing.
Critics have said that the justice center was poorly conceived, and judges have repeatedly challenged its power to prosecute cases. And in the years since it was created, abuses and deaths at the homes have continued.
Read the full article here
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State moves to toughen enforcement on group homes for the disabled after damning NJ.com report
By Susan K. Livio, NJ Advance Media, December 19, 2024
Her teeth were “not salvageable,” her body “emaciated,” when 18- year-old Leah — a non-verbal woman with autism — arrived at the hospital from her group home in 2021, medical records found.
Her mother demanded answers from the Special Children’s Center, Leah’s group home in Lakewood, and expected the state, which licensed and paid the home $805 a day, to seek accountability.
But three years since Leah went to the hospital, her group home has faced no consequences. And while state investigators acknowledged “the child was harmed or was placed at risk of harm,” abuse and neglect was “not established” because of “a lack a preponderance of evidence,” according to the investigators report.
The disturbing case, examined in a report by NJ Advance Media in February, provided the impetus for a packed and emotional hearing at the Statehouse in Trenton on Thursday to discuss sweeping changes to how the state monitors group homes and penalizes the operators found to have harmed residents in their care.
Sen. Joseph Vitale, D-Middlesex, chairman of the Senate Health, Human Services and Senior Citizens Committee and bills’ prime sponsor, heard testimony but declined to post for a vote on two of the most consequential and controversial bills.
One, (S-3750) would grant the Department of Human Services for the first time the authority to impose fines on bad group home operators, ranging from $5,000 to $25,000, depending about the violation. The other bill, (S-3752) would mandate the appointment of a board to oversee the spending of group homes with state contracts worth at least $250,000, and mandate an annual audit companies with contracts worth $2 million or more. The bill would also limit executive salaries to no more than $250,000, based on the size of the state contract.
At the hearing, Margarette Adams and Maria Rogers stressed they were grateful that group homes exist, because their 54-year-old brother Marlon had complex needs and relied on them for decades. But they pleaded for more stringent oversight.
As they wept, they explained how Marlon died choking on his own vomit Saturday. Adams said walked in and found her brother choking on the couch, while she saw employees sleeping.
There were other instances of abuse and neglect, of Marlon inexplicably losing drastic amounts of weight and no one at the group home or at the state found anything wrong, the sisters said. Everything was always “unsubstantiated,” Rogers said.
“They are policing themselves,” Rogers said
Paul Aronsohn, the Ombudsman for Individuals with Intellectual and Developmental Disabilities and their Families, and parent-advocate Donna Icovino from Bucks County, Pa., urged the committee to go even further in demanding accountability. They urged Vitale to consider copying New York, which created the New York Center for the Protection of People with Special Needs, an independent agency that investigates abuse and neglect. (* See previous article, which mentions the poor record of the NY Justice Center, above)
“The vast majority of incidents are discounted — even those resulting in a death,” Icovino said of New Jersey’s system. “Holding providers accountable will end up being a rare occurrence and therefore an ineffective means of reducing abuse and neglect.”
State Human Services Commissioner Sarah Adelman, whose office collaborated on drafting the legislation, said the changes these bills would deliver would be “transformative.”
Group home operators who fail to investigate abuse and neglect claims would face fines. So would an agency face fines when “it is clear a series of systemic failures led to a bad outcome, which is an authority we lack today,” Adelman said.
The legislation would also limit administrative expenses to 15% of a state contract.
“Some in the industry have asserted these bills are an overreach. but to be clear, this Legislature imposed even more rigorous standards on New Jersey’s nursing facilities just a few years ago,” Adelman said.
With $3.4 billion spent a year on housing and other services for 28,000 people with intellectual and developmental disabilities compared to $2.2 billion on nursing homes services 25,000 people, ”it is reasonable to expect we hold similar providers to similar standards," she said.
But group home operators and their lobbyists warned that fines and limits on compensation and how money is spent would cause financial havoc and detract from care.
Read the full article here
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FBI searching autism centers in Minneapolis, St. Cloud after finding ‘substantial evidence’ of health care fraud
Federal law enforcement suspects many autism centers are billing the state for services not actually provided to young Minnesotans with autism spectrum disorder.
By Stephen Montemayor, Deena Winter, and Jessie Van Berkel, The Minnesota Star Tribune, December 12, 2024
The FBI raided two Minnesota autism centers Thursday as part of an investigation it said revealed “substantial evidence” of millions of dollars in fraudulent Medicaid claims from companies participating in a state program serving young people.
The searches are in connection with an investigation into the Early Intensive Developmental and Behavioral Intervention (EIDBI) health care program that is funded by the state and federal governments and serves people under 21 with autism spectrum disorder — an alleged fraud investigators say overlapped with the massive Feeding Our Future food aid fraud conspiracy.
According to a 54-page search warrant application, the FBI searched the Smart Therapy Center in Minneapolis and the Star Autism Center in St. Cloud. A Star Tribune reporter observed FBI agents in the hallway of Smart Therapy Center’s office. Smart Therapy Center received about $13.8 million in Medicaid reimbursements between 2020 and 2024 to provide EIDBI-related services, the warrant says. Star Autism has received more than $6 million since it was formed in 2020.
Continued
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Time running out for Creative Care Centers in Tucson
By J.D. Wallace, KOLD News-13, December 18, 2024
Time is ticking for a trusted Tucson provider of day treatment for adults with disabilities and their families.
Creative Care Centers failed to have its contract renewed by the state, which makes the next two weeks its last.
The for-sale sign on the gate shows the brutal reality for Creative Care Centers, which has been around for 13 years. But when they asked the Division of Developmental Disabilities for help to remain a place for day treatment training for adults, the formal response resembled little more than “too bad.”
“I’m still very stressed out because he’s been coming here forever,” said Socorro Garcia, who has been bringing her son Vinny Montes to Creative Care Centers for a decade.
Montes is 29 years old with cerebral palsy, autism, severe developmental delay, seizures, behavioral problems, and spina bifida occulta.
Garcia is a radiologic technologist and needs creative care centers for Montes so she can work full-time.
“I don’t know. I don’t have a place yet. I haven’t found a place for him yet. Which is very stressful,” Garcia said.
In a response to inquiries about what more could be done for creative care centers and their clients, the Arizona Department of Economic Security said that its Division of Developmental Disabilities has been helping parents like Garcia:
“In August 2024, the Division began working with affected individuals to identify alternative providers to ensure continuity of care and service delivery so there are no service gaps for members,” part of the response read.
“No, we’re still just moving forward with the ones who have been able to find placement, and then the other ones are just staying with us until the end and hopefully they’ll find placement. If not, they’ll be with their parents or a caregiver or whoever at home,” explained Sarah Kelder, owner of Creative Care Centers when asked if all of the members have been transferred to other providers by DDD.
Names of other providers have been given to families by case workers or DDD, but that has been the extent of the assistance for some like Garcia.
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Ohio - 'Replace you with a stranger': Families seek to retain right to care for disabled children
by David Winter, WKRC, December 17, 2024
Parents of developmentally disabled children are suing the state of Ohio so they can continue caring for their children who cannot live on their own.
Many parents want to provide home care for their developmentally disabled children as opposed to putting them in institutions or hiring home care workers. Up until this year, parents could become qualified and then get paid by the state as caregivers. But the Ohio Department of Developmental Disabilities (DoDD) passed a rule in January that forces these parents to attempt to hire outside care workers for their children. That rule affects Maeve Sodano's family and 40,000 other children like her in Ohio who need serious care.
“She needs help with all of her activities of daily living,” said Lindsey Sodano. “So that's, you know, eating, drinking, bathing, dressing, toileting, all of that. And we're helping her with just, you know, all of the time and just trying to keep her safe because she definitely likes to get into trouble.”
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Ohio Families File Legal Action Against Department of Developmental Disabilities Over Unlawful Guidance Jeopardizing Care for Children with Disabilities
FOR IMMEDIATE RELEASE, End Ohio Parent Penalty, December 16, 2024
Today, a coalition of Ohio families filed a legal action in the Supreme Court of Ohio to challenge an unlawful policy issued by the Ohio Department of Developmental Disabilities (DODD) that disrupts caregiving for children with profound disabilities. This mandamus action seeks to end DODD’s enforcement of its four to six month provider replacement search requirement, which was implemented through an agency guidance document without proper public review or legal authority.
The families argue that DODD’s policy, which is not included in the Ohio Administrative Code (OAC) 5160-44-32, violates Ohio law and the procedural requirements for rulemaking under Ohio Revised Code Chapter 119.
“DODD’s guidance is creating chaos for families who already face the enormous challenge of caring for children with profound disabilities,” said Lindsey Sodano of End Ohio’s Parent Penalty. “This policy forces families into a cycle of instability, requiring parents to try to replace themselves as care workers every few months, disrupting consistent care for children, and putting the children’s health and safety at risk.”
Read the full legal filing here: Supreme Court of Ohio Clerk of Court - Filed December 16, 2024 - Case No. 2024-1724
Harm to Families
At the heart of the issue is DODD’s requirement for county boards to conduct provider searches every 4-6 months to replace existing parent care workers. Families report being required to interview inappropriate applicants, such as a caregiver who lacked CPR/First Aid certification or a person who arrived to the interview in profanity-laden attire. DODD says if the family rejects these “willing and able providers for whatever reason,” the parent’s eligibility to work as a caregiver will be revoked.
“This is about more than legal violations—it’s about protecting children’s rights to stable, appropriate care,” said Jennifer Dietsch, one of the Relators in the lawsuit. “My child cannot afford to lose the caregiver they trust just because of an arbitrary bureaucratic policy.”
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Massachusetts - For people with developmental disabilities, turning 22 can feel like 'falling off a cliff'
By Amory Sivertson and Yasmin Amer, WBUR Radio Boston, December 13, 2024
Being in your early 20s can be an exciting time. For thousands of young people with developmental disabilities, however, the early 20s can feel more like "falling off of a cliff," as many families describe it.
When a young adult with a developmental disability in Massachusetts turns 22, they transition out of the special education programs they’re entitled to by their school district and into programs run by the state. Those programs aren't guaranteed and many have long wait lists. The consequences of not being in a program, or the right program, can be devastating for families.
WBUR's Radio Boston spoke to Janet Fennelly, whose son, Coleman, has a developmental disability. She described the difficulty navigating services in Massachusetts. We also spoke to Sarah Peterson, whose serves as the acting commissioner of the Department of Developmental Services.
Listen to the interview here
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Californians Most in Need of In-Home Health Care Struggle to Access It
By Selen Ozturk, Asian Journal Press, December 13, 2024
Access barriers to California’s in-home public health care program are highest for older, disabled and unhoused adults who most need it, a recent study finds.
The report, released by legal advocacy organization Justice in Aging, is based on extensive interviews with over 80 patients, providers, advocates, and state and national policymakers for In-Home Supportive Services (IHSS), Califorrnia’s largest Home and Community-Based Services (HCBS) program.
HCBS is how Medi-Cal, the state’s version of Medicaid, pays for personal or in-home care, which includes help for older and disabled adults with daily activities like dressing, eating, and cleaning, to keep them living at home rather than in institutions and nursing homes.
“I pray every day that I can kind of remember, because once you get on these services you have to reapply and recertify,” said one patient cited in the study. “I have to stay on top of my Medicaid and any other subsidy I get. I have to literally apply every year. Make sure I have all my information, my bank information, and it’s a lot. It is really a lot.”
“For some individuals (with Alzheimer’s and no family support), when we ask questions, like what (health) plan do you have, or about their finances, they just have a hard time answering some of those questions, so it becomes kind of tricky,” added an IHSS advocate. “How are they going to be able to follow through?
”
Over 591,000 Californians get in-home care through IHSS.
There are over 550,000 IHSS providers, or caregivers, as of 2021.
Continued
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Older and Disabled Hoosiers Harmed by Indiana Waiver Wait List
By Jeremy Hogan, The Bloomingtonian, December 14, 2024
In December 2023, the State of Indiana announced a $1 billion overspend in the Medicaid budget. In response, the State implemented abrupt changes to the Indiana Home and Community-Based Waivers—now known as the PathWays Waiver and the Health and Wellness Waiver—without consulting key stakeholders or assessing the impact on Hoosiers and the state budget. These changes have severely harmed some of Indiana’s most vulnerable citizens, particularly older adults and individuals with complex medical needs.
Waiver services offer critical home- and community-based care to eligible individuals who meet nursing facility level-of-care requirements. Services include attendant care, adult day care, home-delivered meals, structured family care, and assisted living facility services, which are both cost-effective and highly desired by Hoosiers.
As of November 1, 2024, more than 8,700 individuals are on the waitlist for the PathWays Waiver (ages 60+), and over 4,700 individuals are waiting for the Health and Wellness Waiver (under age 60). While 1,500 eligible individuals were recently removed from the PathWays waitlist and 500 will be removed monthly from the Health and Wellness waitlist, the remaining demand far outpaces availability. New applicants face significant delays, leaving many without access to necessary services.
Indiana had made significant strides in providing care options for older and disabled adults, ranking 27th nationwide in 2023 for long-term care services. However, the new waiver waitlists represent a major setback, endangering lives and pushing families to the brink of financial and emotional collapse.
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New York at crossroads in support people with disabilities
By Assembly Member Rebecca Seawright, Long Island Press, December 13, 2024
New York is at a vital crossroads when it comes to supporting individuals with intellectual and developmental disabilities and the workforce that provides essential care.
The voters of the state recently and overwhelmingly approved the Equality Amendment to the New York State Constitution, which I proudly sponsored. It protects from discrimination, for the first time within our primary state governing document, people with disabilities.
Now we must turn our attention to the plight of the dedicated workers who provide critical assistance every day to our community. The challenges are immense, but so is the opportunity to enact meaningful reforms this year.
New Yorkers with disabilities and their families struggle to navigate a care system weakened by chronic underfunding and workforce shortages. Direct Support Professionals—the backbone of this system—are leaving the field in droves because their wages are far below what they need to support themselves and their families. Non-profit providers are being pushed to the brink, unable to keep pace with rising costs for housing, food, transportation, and energy.
Disability services contribute over $14 billion to New York’s economy, sustain nearly 200,000 jobs, and generate $2 billion in tax revenue each year. The system depends on Medicaid rates that fail to cover the true costs of care, forcing providers to do more with less year after year.
If New York is to live up to its promise of fairness and inclusion, Governor Hochul should include necessary investments in the 2025-26 budget: a 7.8% rate increase in rates that support services for individuals with disabilities depend on to live, work, and thrive.
Despite increases that the Governor and the Legislature most fortunately provided over the past four years, inflation has driven costs through the roof. Without a 7.8% increase, providers will face further cuts to staffing and programs, and families will lose access to vital services.
The care crisis is, at its core, a workforce crisis. DSPs in the non-profit sector support over 85% of individuals with I/DD in New York, but their wages are far below those of state-employed counterparts.
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South Carolina - Gov. McMaster wants mental health, disability departments in his cabinet after lawsuit
By Joseph Bustos, The State, December 12, 2024
A lawsuit against the state for how it treats clients of the Department of Mental Health has led to a renewed push from Gov. Henry McMaster to put the Department of Mental Health and Department of Disabilities and Special Needs under his purview as part of his cabinet.
During the last legislative session, a plan to consolidate six health-related agencies, Mental Health, Disability and Special Needs, the Department of Public Health, Department on Aging, Department of Alcohol and Other Drug Abuse Services, and the Department of Health and Human Services into one cabinet agency, failed to cross the finish line after a procedural move made by hard-line conservative House lawmakers.
McMaster this week called for a change to make Mental Health and Disability and Special Needs cabinet agencies that report to the governor’s office. Those two agencies report to a commission, who has members appointed by the governor. He added it’s difficult to make changes within the departments if they report to commissions.
“Those departments are not functioning and I think this lawsuit is probably a reflection of that, but we’ve been working to make them responsible, make them accountable, make them efficient,” McMaster told reporters this week. “Only way I see that we can do that is to make them agencies, so they’ll be directly responsible to me, and we can fix things easily and quickly.”
The federal lawsuit claimed South Carolina relies too heavily on community residential care facilities for people with severe mental illness because of the “state’s failure to make community-based services available to them, and more are regularly admitted to these settings.”
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Georgia’s Medicaid Experiment Is the Latest to Show Work Requirements Restrict Health Care Access
By Laura Harker, Center on Budget and Policy Priorities, December 19, 2024
As Republicans at the federal level prepare to take over majorities in both the House and Senate, some have proposed deeply damaging cuts to Medicaid, including taking health coverage away from people who don’t meet unnecessary and burdensome work requirements. Some state policymakers are interested in pursuing Medicaid work requirements as well. But a Georgia Medicaid program provides the latest evidence that work requirements are the worst sort of red tape — blocking health coverage for working people, people with serious health conditions, and people with disabilities.
Georgia is one of ten states that has not adopted the Affordable Care Act’s Medicaid expansion provision, instead applying for a waiver to provide Medicaid to certain low-income adults, conditioned on meeting work requirements. This waiver program, called Pathways to Coverage, requires adults with low incomes to report at least 80 hours of work or volunteer activities each month as a condition of getting and keeping their coverage. It is available to adults up to 100 percent of poverty, or $15,060 annually for an individual.
The results from over one year of Pathways to Coverage are in:
- About 5,500 people were covered as of November 2024, far less than the 110,000 who initially expressed interest, and well under the about 240,000 uninsured people estimated to potentially be eligible for Pathways.
- Application backlogs, excessive paperwork, and complex rules have left people waiting for coverage after they’ve applied and kept many other people from even applying for the program.
- Spending on administrative changes, such as systems updates, eclipsed spending on health care services and offered little return on investment in facilitating enrollment.
Work requirements prevent people from accessing health care for reasons that are outside their control. For example, many people working low-paying jobs are at the mercy of employers who can reduce their hours without notice. Family emergencies, inconsistent childcare, or sudden illnesses can also disrupt a person’s ability to work. Furthermore, people with disabilities and chronic illnesses are not exempt from the Pathways reporting requirements. They could face challenges finding enough hours to work because employers will not provide reasonable accommodations or their health conditions restrict the amount of time they can work. As a result, people are at risk of not receiving often life-saving health coverage.
Previous work requirement proposals conditioned continuing Medicaid coverage on reporting enough eligible work, or other qualifying activity, hours. Georgia’s Pathways program adds an additional hurdle: requiring work reporting at the time of application, which creates a complex process that deters eligible people from even applying. In June 2024, 42 percent of the people who expressed interest in applying for Pathways were not considered to have a complete application because they did not complete a report showing any number of qualifying activity hours. And among those who did have complete applications, 19 percent were denied due to reporting fewer than the required 80 hours per month or insufficient verification of hours.
Focus groups conducted by Georgia Budget and Policy Institute and Creative Research Solutions back up this data. Pathways applicants pointed to challenges getting support during the enrollment process, technology issues with the enrollment system, or frustrations with getting denied due to paperwork issues and having to wait to have the application checked again.
Georgia is among the slowest states to process Medicaid applications due to excessive bureaucratic strain. Others didn’t feel comfortable applying because they were concerned they would not get approved, likely due to the complex process and the high denial rate in the first year. The frustration with paperwork issues and the stress from not having health coverage are similar to findings from focus groups in Arkansas, the first state to implement a Medicaid work requirement temporarily in 2018.
And although only a small fraction of eligible people have enrolled, the program has cost about $13,360 per enrollee in combined state and federal Medicaid spending through the end of the first year. That’s significantly more than the about $2,490 per enrollee Pathways was initially estimated to cost in the first year. About 35 percent of spending went toward covering care, but most went to systems modifications to implement work reporting. And in August 2024, the state separately spent $10.7 million on an outreach campaign, directing millions to consultants while hundreds of thousands of people are still without insurance.
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[Please click on blue link to view information about the bill]
VOR SUPPORTS:
H.R.10427 - To rqeuire the Secretary of Labor to withdraw a proposed rule relating to certificates issued under section 14(c) of the Fair Labor Standards Act
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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