May 17, 2024

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 & YOU:

VOR's 2024 Annual Meeting


Official Date: June 23, 2024


We will begin with a Board meeting open to members, discussing the state of our organization and the direction of our advocacy work, followed by presentations from our guest speakers, and wrapping up with our annual

Reports from the States.


We are thrilled to announce that we will feature our dear friend, Jackie Kancir. Jackie is the Policy Director of the National Council on Severe Autism, the Tennessee Mom of a daughter diagnosed with SYNGAP1, a frequent blogger at "What We Need Yesterday", and the co-proprietor ( with her daughter Jadyne) of Bunny Egg Acres.


We are also delighted to feature Joseph Macbeth, the President of the National Association of Direct Support Professionals. Joe 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.

Meet Ursula

Ursula is VOR's 2024 Teddy Bear, crafted by our very own Mary Reese.


And Ursula needs a new home...


More about Ursula next week.

Our Lead Item:

Feds Accuse Rhode Island of Warehousing Kids with Mental Health, Developmental Disabilities

By Steve Leblanc, Associated Press via Yahoo News, May 13, 2024


Rhode Island violated the civil rights of hundreds of children with mental health or developmental disabilities by routinely and unnecessarily segregating them at Bradley Hospital, an acute-care psychiatric hospital, federal prosecutors said Monday.


Zachary Cunha, U.S. Attorney for the District of Rhode Island, said the multi-year investigation found that — rather than complying with its legal obligation to provide services in the most integrated setting appropriate to the needs of the children — the state left them hospitalized at Bradley for months and in some cases for more than a year.


“It is nothing short of appalling that the state has chosen to warehouse children in a psychiatric institution, rather than stepping up to provide the community care, support, and services that these kids need, and that the law requires,” Cunha said. He hopes the investigation will prompt the state to take swift action to meet its obligations under federal law.


The findings have been sent to Gov. Dan McKee and the Rhode Island Department of Children, Youth and Families.


“This troubling report identifies long-standing issues where improvements are clearly needed,” said Olivia DaRocha, an aide to McKee, “issues that are exacerbated by the national shortage of home and community-based behavioral health services.”


“While the administration has taken actions to improve our current placement system, we understand that more must be done, and we support DCYF’s continued cooperation with the U.S. Attorney and the U.S. Department of Health and Human Services,” she added. “Together, we will continue to seek short- and long-term solutions to provide each child with a behavioral health disability the appropriate services in the most integrated setting.”


Although inpatient admissions at Bradley are designed to last only one to two weeks, the federal investigation concluded that children with behavioral health disabilities in DCYF’s care were often forced to languish in the hospital despite being ready for discharge, and despite the fact that the children would be better served in a family home, investigators said.


From Jan. 1, 2017, through Sept. 30, 2022, 527 children in the care or custody of DCYF — or receiving services voluntarily through the agency — were admitted to Bradley Hospital. Of these, 116 kids were hospitalized in a single admission for more than 100 consecutive days, 42 were hospitalized for more than 180 days, and seven were hospitalized for more than one year.


Many of the children were subjected to avoidable and unnecessarily lengthy hospitalizations because DCYF failed to provide the community-based services they need, according to investigators, who said keeping a child hospitalized for an extended period when their needs could be served in a less restrictive setting only exacerbates the child’s acute needs.


To date, 90% of the youth in the program did not end up requiring psychiatric hospitalization, he said.

The state is also investing about $45 million to expand in-state residential capacity, including a facility in Exeter that will serve 16 youth. The state Legislature also appropriated $11 million for the building of a 12-bed psychiatric residential facility to address in-state capacity need.


The investigation, which was also conducted by the U.S. Department of Health and Human Services Office of Civil Rights, also found that DCYF’s failure to look for placements in a family home setting with services could lead both to delayed discharges and to inappropriate placements post-discharge, which, in turn, often leads to subsequent hospitalizations.


Office of Civil Rights Director Melanie Fontes Rainer said the investigation reinforces the agency’s commitment to continue to protect the right of individuals to live in their own homes and communities.

“We must do better by our children and the communities we serve, and states and others must follow federal civil rights laws to ensure every child can access care free from discrimination,” she said.


Read the full article here

Op-Ed: Urgent Action Needed to Support Rhode Island’s Youth with Mental Health and Behavioral Needs

By Senators Sandra Cano, Alana DiMario, Louis DiPalma, Valarie Lawson and Joshua Miller, What's Up News, May 16, 2024


“We are not meeting our shared obligation to some of Rhode Island’s most vulnerable children,” we wrote in 2021, in an opinion piece intended to highlight the urgent need to improve our treatment programs for youth with behavioral health issues, and particularly girls. “This is an emergency. It is also an equity issue that needs to be addressed as soon as possible.”


It is extremely troubling that those same words are just as applicable today as they were when we first wrote them.


On May 13, US Attorney Zachary A. Cunha described an “appalling failure” of our state to appropriately meet the needs of children with behavioral health issues, particularly girls. He outlined a situation in which hundreds of Rhode Island children were hospitalized, usually at Bradley Hospital, for unnecessarily lengthy periods of time.


We are failing these children, and, frankly, it is unjustifiable.


So again today, we are calling for urgent action to address this situation. We need to work together – all of us, the Legislature, Governor McKee, the Department of Children Youth & Families (DCYF), the Department of Education (RIDE) – to address the systemic failures that have led to this situation.

Firstly, it is important to say how much we value and respect the work taking place at the DCYF and RIDE. We appreciate the difficulty of the jobs they do and their dedication to the children and families in our state.


Let us all work together, with increased urgency, to provide sustained investments in supportive services throughout the continuum of care, including at home and at school – and in those services between counseling and hospitalization – to ensure our children receive the supports they need in the most appropriate settings.


These issues have been – and continue to be – priorities for us in the Senate. We have advanced legislation and conducted several oversight hearings with DCYF and RIDE in our efforts to improve treatment and to ensure that children are receiving quality education regardless of their placement. To that end, it is absolutely imperative that RIDE ensure all children, including those placed at Bradley, have an educational plan in place.


In the Senate, we have prioritized – and in 2022 the General Assembly provided $57 million to fund – two residential treatment facilities, one for psychiatric treatment and one for behavioral health treatment. While it is important that these facilities are brought online as expeditiously as possible, this will not be enough to solve the problems we are facing, as Mr. Cunha noted.


The General Assembly also appropriated $22.9 million in wage stabilization funds to help DCYF recruit and retain qualified staff. However, these funds were temporary by nature. Another critical step is for the department to enter into new contracts that increase reimbursement rates to providers. These contracts are long overdue, and we hope and expect that they will be awarded soon.


Additionally, we expect that the Senate will again pass legislation (S-2705) requiring DCYF to conduct periodic comprehensive needs assessments to determine whether the department’s programs and services meet the needs of children and families in their care, assess client accessibility, and collect data to develop goals and measurable objectives for new and existing programs and services. This data is an important step as we work to strategically improve our systems of care.


Finally, we need an Olmstead Plan.


The Supreme Court ruled in Olmstead v. L.C. that states must make services available to individuals with disabilities in the most integrated setting possible. That decision was in 1999. While this administration – and prior administrations – have worked towards compliance, we remain the only state in New England, and one of just a few in the nation, that lacks a plan.


Therefore, the Senate is scheduled to consider legislation (S-2618) that would create, by statute, an Olmstead Planning Commission to develop this long-needed plan to better serve people vulnerable to unnecessary institutionalization.


Too often, we have made decisions based on short-term budgetary pressures, and that has led us to the insufficient services in place today. However once in place, better care, in more appropriate settings, will not just benefit the individuals being served; it is also more cost effective.


The extremely troubling findings by the US Attorney are a reminder that we can and we must prioritize sustained investments throughout our continuum of care to better serve Rhode Island’s most vulnerable children and families.


Click here to link to the Senators' statement

A Brief Editorial Statement from VOR


Rhode Island dismantled its safety net years ago, when it closed its state-operated intermediate care facilities (ICFs) rather than rebuilding them and bringing them into the 21st Century. Instead, it has relied on private providers to develop and staff its system of care for people with intellectual and developmental disabilities and autism.


Private providers are not required to take on clients who they feel they cannot accommodate. And private providers have difficulty finding staff at fixed wages that are set by the federal minimum wage and then augmented by appropriations passed by state legislators, including those who wrote the editorial above.When the private sector is unable to address the needs of individuals who require high levels of care, the state's fall-back plan has been to place them in psychiatric facilities, like Bradley Hospital.


So who is to blame for this? The private providers? The state legislators? The federal government? The people of Rhode Island? Advocacy groups who have touted anti-institution ideologies for the past 60 years?


The answer of course, is a combination of all of the above. We as a nation, and the people of the state of Rhode Island and their legislators, have built an unsustainable system of care based on privatization of services for the most vulnerable, which relies on a grossly underpaid workforce of dedicated caregivers. And when this system fails, which is pretty much a foregone conclusion, the safety net is a psych hospital, which is in itself another failure. Rhode Island, like many other states, is failing to care for its most vulnerable citizens, and is failing their families.


"We need an Olmstead Plan"


Obviously, the State Senators who wrote the above editorial haven't read Olmstead v. L.C., or they missed the part wherein Justice Anthony Kennedy wrote,


“It would be unreasonable, it would be a tragic event, then, were the American with Disabilities Act of 1990 (ADA) to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”


"...States may be pressured into attempting compliance on the cheap, placing marginal patients into integrated settings devoid of the services and attention necessary for their condition.” (Olmstead at 610)


Nor did they read the section wherin Justice Ginsburg quoted VOR's amicus that states, “Each disabled person is entitled to treatment in the most integrated setting possible for that person - recognizing that, on a case-by-case basis, that setting may be in an institution.” (Olmstead at 605)


A good Olmstead plan would include a real, practical safety net. It would provide sufficient ICF-level care for those who need it. In 2019, there were only 37 people receiving ICF services through 3 private providers in Rhode Island. It is unlikely that this number has increased in the past five years. If the private sector won't meet the needs of the state's residents with severe or profound I/DD and autism, the state needs to step up and rebuild its safety net.


How many of the families of those 527 people who have been stranded in the psychiatric facilities at Bradley Hospital would have chosen a good, modern intermediate care facility if given that option? It isn't difficult to guess.


The 25th Anniversary of Olmstead is June 22nd.


Click here to download Olmstead v. L.C.


Click here to read or download VOR's "Olmstead - Essential Passages Protecting Choice"


Click here to read further resources from VOR's Olmstead page

National News:

Private Equity Investment In Disability Services Draws Scrutiny

By Shaun Heasley, Disability Scoop, May 14, 2024


Federal officials are concerned about increasing private equity investment in home and community-based services and other offerings for people with disabilities and they want the public to weigh in.


The U.S. Department of Justice’s Antitrust Division, the Federal Trade Commission and the Department of Health and Human Services recently issued a joint request for information about the impact of health care mergers, acquisitions and other transactions by private equity funds or other alternative asset managers, health systems or private payers.


“Given recent trends, we are concerned that some transactions may generate profits for those firms at the expense of patients’ health, workers’ safety, quality of care and affordable health care for patients and taxpayers,” reads the agencies’ request.


Specifically, the agencies said they’re looking for insight on how transactions involving health care providers — including home and community-based services providers for people with disabilities and behavioral health providers — are impacting patients, communities, workers and more.


“We are also interested in hearing directly from patients and health care workers about how their experiences in the health care system changed after a facility or other provider where they work or receive treatment or services was acquired or underwent a merger,” the notice indicates.


The agencies said that information provided may help them identify enforcement priorities or inform new regulations.


Comments will be accepted through June 5.


Read the full article here

Related Article

Markey Targets Private Equity in Health Care

By McKenzie Beard, The Washington Post, May 17 2023


This year, Sen. Edward J. Markey (D-Mass.) has zeroed in on the hundreds of billions spent by private equity firms snapping up physician practices, hospitals, labs and nursing homes across the country. 


The trend has sparked criticism from federal regulators and watchdogs, who say the financiers enrich investors by monopolizing markets, raising prices and compromising patient care — allegations the industry’s main lobbying group refutes. 


I caught up with the chair of the Senate’s Primary Health and Retirement Security subcommittee this week to talk about private equity and more. The conversation has been edited for clarity and brevity.


The Health 202: Private equity involvement in the health-care sector has been growing for some time. What drew your attention to this issue?


Markey: It was in the wake of Steward Health Care’s bankruptcy filing. [CEO] Ralph de la Torre, Steward, Capital Management and their private equity allies will be remembered for their reckless decisions to put their profits over people’s lives and livelihoods — and that’s what drew my attention to this issue. 


Steward let their health system fall into the control of private equity firms and real estate investment trusts like Medical Properties Trust. Now the bankruptcy court will have to untangle their answers and hopefully make decisions that keep these hospitals open. 


The Health 202: What have you heard from your constituents? 


Markey: The Steward system provides health care for 200,000 patients per year in Massachusetts. I held a listening session with health stakeholders and I also received outreach from constituents all over the state. The feeling was unanimous: We’ve got to do something to protect patients and providers from corporate greed. 


Thus far, Steward is continuing to provide health care for those who have been in the system. It is absolutely imperative that no one loses their health-care access because of this private equity-driven crisis. 


The Health 202: You released a discussion draft of legislation on the issue last month. What would it do?

Markey: The goal of my Health Over Wealth Act is to protect patients and providers by mandating the private equity company set aside funding to protect access to care, removing tax breaks that incentivize companies to strip hospital assets, and giving a bigger voice to workers and patients to review and block seats that would impact patient care, access or safety. 


The Health 202: Is this an area you see as ripe for bipartisan action?


Markey: I actually think it is. We’re still at the early stages of this process, but other efforts to take on private equity in health care are also beginning to surface. The reality is that the Steward system itself has 31 hospitals across the country, and many of them are in red states. As a result, I think we really have a chance to make this legislation bipartisan. 


Read the full article here

Education:

Supreme Court Asked To Consider Whether Parents Can Record IEP Meetings

By Michelle Diament, Disability Scoop, May 13, 2024


The U.S. Supreme Court is being asked to take up a case centering on whether parents have the right to record meetings with their child’s school district about special education services.


Scott Pitta recently appealed to the high court after a federal appeals court determined that school officials could prohibit him from video recording a virtual meeting about his son J.J.’s individualized education program, or IEP.


At issue is whether parents have a First Amendment right to “record government officials in the performance of their duties.”


The case, Pitta v. Medeiros, originated after a 2022 IEP meeting with the Bridgewater-Raynham Regional School District in Massachusetts that was held via Google Meet. Concerned that school officials had left important information out of the minutes from previous meetings, Pitta indicated that he was video recording the session. At that point, school officials terminated the meeting in line with their policy against video recording.


Pitta sued alleging that his First Amendment rights had been violated. But both the federal district court and the U.S. Court of Appeals for the First Circuit dismissed the claim because the government officials in question — school employees — were not operating in a “public space” or having discussions that would typically occur publicly.


“Pitta’s argument ignores established limitations in First Circuit law, which permit recording of government officials performing their duties only in indisputably public places in full view of the public, and even then, only when the act of filming would not hinder officials in the performance of their public duties and would serve public interests,” reads the appeals court decision issued in January.


In appealing to the Supreme Court, Pitta argues that circuit courts across the country are split on this issue and a national standard is needed.


Continued

Related Article

Connecticut - For CT parents, Special Dd Meetings with Schools are ‘A Battlefield’  

By Jessika Harkay, CT Mirror, May 12, 2024


At least once a year, parents of students with disabilities enter a meeting with school district leaders to discuss their children’s development and any changes to their individualized education plans, which spell out what services students will receive that school year.


State guidelines say parents are “an equal member” of the Planning and Placement Team — a group also made up of teachers and school administrators that determines the educational needs of a child — but the families in the room and hired experts that help them navigate the special education system say otherwise.


They describe the meetings as a battlefield.


They say the encounters often end with ignored concerns, belittlement or intimidation on the part of school officials toward parents.


Parents, lawyers and special education advocates say the problem isn’t the educators in the classroom but instead local administrators who create a relationship that’s lacking in partnership and transparency.


“There’s hundreds of cases of poisoned relationships between schools and parents,” said Andrew Feinstein, a special education attorney who’s been practicing for over 30 years. “[Districts] think they absolutely understand the child, but they don’t understand them at all. … It’s this kind of arrogance of expertise … where they’re going through the motions and talking to parents like, ‘We’re doing what we have to do. … And our hope is the parents agree with us, but if they don’t? Well, we still know what’s right.'”


In a statement to The Connecticut Mirror, the state Department of Education stated that “positive and proactive communication between the school district/program and the parent is essential to effective outcomes for students with disabilities.”


Matthew Cerrone, the education department’s director of communications, also outlined state resources, including the Bureau of Special Education Call Center and the Connecticut Parent Advocacy Center, which can help parents understand procedural safeguards, file complaints and other “options to help families and schools resolve disputes.”


But stakeholders argue that more has to be done.


Continued

Related Article

Unable To Find A School For Their Son, Family Navigates Special Education With No Answers

By Alysa Guffey, Chicago Tribune via Disability Scoop, May 8, 2024


For more than eight months, Jennifer Schuh has felt powerless as she watches her 8-year-old son with special needs sit at home, isolated from his peers and unable to attend school.


Diagnosed with autism and attention deficit hyperactivity disorder while he was in preschool in early 2021, her son has spent little time in a classroom because of numerous roadblocks.


Schuh has toured specialized schools, hired an in-home tutor, created at-home lesson plans herself and eventually filed a grievance against the school district. Now, she doesn’t know what else to do to help her son.


Experts say a slew of factors are frustrating special education families in Illinois — including a shortage of teachers, school aides and substitute teachers in addition to a lack of space and resources at therapeutic day schools.


And as Schuh’s experience illuminates, solutions are not readily available for some of Illinois’ most high-need young students when public districts lacking resources cannot guarantee school placements, even though they are federally mandated to provide a free and appropriate education for special education students.


COVID, experts say, has made matters worse.


In the wake of the pandemic demand for more intense educational services is high, said Charles Fox, a special education lawyer based in Buffalo Grove who has represented families in similar cases for the past 30 years. The current need for special education puts pressure on the supply of available desks and families seeking services.


“I’m afraid we’re going to see it for at least the next 10 years,” Fox said.


Continued

This School for Autistic Youth Can Cost $573,200 a Year. It Operates With Little Oversight, and Students Have Suffered.

By Jennifer Smith Richards and Jodi S. Cohen, ProPublica, May 8, 2024


No state agency has authority over Shrub Oak, one of the country's most expensive therapeutic boarding schools. As a result, parents and staff have nowhere to report bruised students and medication mix-ups.  


From the first months that Brett Ashinoff was at Shrub Oak International School in New York, his parents felt uneasy about the residential school for students with autism.


They worried that Brett, who already was thin, was losing weight. They said his nails weren’t getting cut. He would refuse to get into the car to return to Shrub Oak after visits home, sitting for hours on the porch until his father coaxed him into the vehicle.


His parents’ concerns, documented in email exchanges with school administrators, began soon after he started in April 2022 and grew over time. Brett’s speech therapy was reduced because of limited staff. He wasn’t given his medication for at least five days in a row. “Kindly accept our sincerest apologies,” Lauren Koffler, a member of the family that operates the school, wrote in an email to Brett’s mother about the medication. She said an error with the pharmacy was responsible for the lapse.


Then came a series of confrontations with overnight staff in February 2023. Brett, his parents said, had never been physically restrained at a school before going to Shrub Oak. But employees restrained the 18-year-old, who weighed 95 pounds, at least three times one week after he became aggressive with them. One of those nights, several employees took him to a padded room and held him down on the floor. He sustained injuries, including a cut on his leg, according to emails between the school and his parents.


When Brett called his mother crying and begging to leave, Russ Ashinoff, his father, got in his car and drove two hours from his home in New Jersey to Shrub Oak, located in Westchester County.

He said he arrived to find Brett shaking, his foot purple and swollen. His nose was bruised and cut. “He was inconsolable, not himself,” Ashinoff said. He took Brett to an emergency room, where he was sedated, records show. Brett had never before needed to be sedated, his father said.


Ashinoff said he tried to report suspected abuse to several agencies in New York. The attorney general’s office took his complaint but told him it didn’t have jurisdiction and referred him to the New York State Education Department, according to the attorney general’s office. The Education Department told Ashinoff that it, too, couldn’t do anything, he said.


Ashinoff scribbled notes on the back of an envelope as he was repeatedly turned away.


“I never imagined you could have a school with a bunch of kids who are vulnerable that would be a free-for-all,” said Ashinoff, a physician. “The health department comes in and looks at every McDonald’s, but nobody is going to check out a school?”


He’s right. No state agency oversees Shrub Oak, which enrolls a range of students with autism including those whom other schools declined to serve and who have severe behavioral challenges and complex medical needs. The private, for-profit school chose not to seek approval from New York’s Education Department.


That means it has gotten no meaningful oversight and state officials have had no authority over the school — over who works there, whether money is spent properly and if the curriculum and services are appropriate for students with disabilities.


Even without New York’s approval, Shrub Oak receives public money from school districts across the country that pay tuition for the students they send there.


The New York Education Department said it does not track how many unapproved schools operate in the state. It oversees hundreds of approved private schools, which gives them the ability to issue diplomas and take tuition money directly from New York school districts.


New York’s position is that the states sending students to Shrub Oak are responsible for them. But some states and districts have struggled to monitor students’ progress or well-being or didn’t check on them in person, the ProPublica investigation found. The failures of oversight come at a time when more young people are being diagnosed with autism and school districts and families are desperate for help educating them.


Read the full article here

State News:

Parents of Disabled Children Sue Indiana over Medicaid Changes Addressing $1 Billion Shortfall

By Isabella Volmert, Associated Press via ABC News, May 17m 2024


Parents of two children with disabilities are suing an Indiana agency in federal court over changes to attendant care services they say violate the Americans with Disabilities Act and federal Medicaid laws.

A state agency overseeing Medicaid has reimbursed parents, guardians and spouses for home care for years.


Starting July 1, the state will no longer reimburse family members or guardians. The changes were proposed as a part of a cost-savings plan after the agency — the Family and Social Services Administration or FSSA — underestimated its Medicaid expenditures through July 2025 by nearly $1 billion.


Families of children who require constant medical attention in particular say the transition is mismanaged. The lawsuit alleges children’s health and well being is at risk and asks the court to order the state to continue reimbursing parents and guardians.


“This is a legally complex case about medically complex children,” the complaint filed Friday said.

A spokesperson for the FSSA did not immediately respond to an emailed request for comment. The state has said the attendant care services are where the Medicaid program is “most acutely seeing an unanticipated growth in spending.”


The American Civil Liberties Union of Indiana and Indiana Disability Rights are representing the families and the Indiana Protection and Advocacy Services Commission in the lawsuit.


Families of children with a variety of complex medical needs have spoken out against the changes since they were first proposed in January. The complaint says the Medicaid payments help rural families who are far from facilities with trained personnel and are a financial necessity for parents unable to work while caring for their children.


Parents must provide constant care including feedings through a gastronomy tube, operating a ventilator, monitoring seizure activity and administering medications, the complaint says.


The FSSA has said it will work with families to find alternate care options, but the lawsuit alleges the new reimbursements rates are not sufficient.


The complaint said the changes could result in some children who need constant medical attention being placed in an “institutional environment," especially if their parent must return to work to pay for the care. The lawsuit says parents of children with such disabilities often prefer to care directly for their child to suit their individual needs.


The mothers named in the suit care for a 6-year-old boy with rare genetic disorder called cri-du-chat syndrome and a 10-year-old who has hypoxic-ischemic encephalopathy, a type of brain damage. 


Continued

Florida - Governor Signs Law to help First Responders Interact with People with Special Needs

By Angelicia Bruton, WTSP News-10, May 11, 2024


Florida has a new law designed to improve how police and first responders interact with people with special needs.


This law is called the SAFE Act or Safeguarding American Families Everywhere.

Gigi's Playhouse in Tampa is a safe haven for many people with down syndrome. Jessica Gonzalez said the best part is seeing her son Travis smile. 


“It's really important to get the community involved, for them to learn. People with disabilities are people. They need to be involved, they need to be doing all the things that neurotypical people do,” Gonzalez said. 


During the 2024 legislative session, Florida lawmakers wanted to make the state's highways a safe place for special needs individuals. 


The new law adds a question to Florida’s motor vehicle registration form. It asks if a person has or is the parent or guardian of someone with a specific disorder or disability. 


“Unfortunately, individuals with intellectual development disabilities or other forms of hidden, disabilities are often mistakenly perceived as suspicious when the behavior is actually associated with their condition,” Rep. Michelle Salzman said.


The word 'safe' shows up on the vehicle's registration and is available to rescuers who may be responding to a crash or traffic stop. 


“My child, even though he is verbal, there will be a lot of things that he will not be able to communicate. So, the fact that the police officers are already going to have that information once they come up to the vehicle, I think is super important,” Gonzalez said. 


Gonzalez said this is a step in the right direction, but she would also like to see officers and first responders receive more training on how to interact with someone who has special needs.


Continued

Texas - Brenham State Supported Living Center Celebrates Fifty Years of Compassionate Care

By Natalie Petrovich, Hoodline, May 11, 2024


Half a century of support and care was marked by the Texas Health and Human Services Commission at the Brenham State Supported Living Center (SSLC), celebrating the big 5-0 with a day packed with events. Spirits were high as residents and their families enjoyed a parade, showcasing floats from both staff and residents, an impactful visual slideshow of cherished memories.


In a statement released by the Texas Health and Human Services Commission, Executive Commissioner Cecile Erwin Young emphasized the facility's legacy, "The Brenham State Supported Living Center has a rich, full history of providing compassionate care."


Adding to the sentiment, Scott Schalchlin, HHSC deputy executive commissioner, noted the center's focus on equipping residents with vital skills, saying, "We help our residents learn the skills they need to be active members of their communities and take advantage of the opportunities available to them."


The day wasn't just about the past though; it was also a demonstration of the community's longevity and dedication to those it serves. Activities such as face painting and bounce houses offered a light-hearted atmosphere, where families and residents could revel together in the joyous occasion, accompanied by the sweetness of ice cream.


Since its opening in 1974 as the Brenham State School, the center has evolved, noted for starting with nearly 300 employees and 400 beds primarily for children with intellectual disabilities. Today, as reported by the Texas Health and Human Services Commission, the center now called Brenham SSLC, has shifted its focus to adult care while continuing to tenderly safeguard over 250 residents within its walls.


As one of 13 such facilities in Texas, Brenham SSLC maintains a range of services round the clock for those with intellectual and developmental disabilities. With offerings that span from personalized behavioral treatment to specialized healthcare, including psychiatric and dental care, to skills training and employment services, the center ensures that residents are not just cared for but are also integrated as valuable participants in community life.


Read the article here


Read a related article here

North Carolina Lawmakers Seek Help for Nearly 18,000 on a Healthcare Wait List

By Colin Campbell and Sharryse Piggott, WUNC Radio, May 14, 2024


About 17,800 people with intellectual and developmental disabilities in North Carolina are on a waiting list for healthcare services. A bipartisan group of state lawmakers held a news conference Tuesday calling for funding to fix the problem.


A program called the Innovations Waiver provides a range of services to people with intellectual and developmental disabilities. Some examples of those disabilities include cerebral palsy, brain injuries and autism spectrum disorder. The program helps pay for things like in-home caregivers.


Niasha Fray's 11-year-old daughter has Down syndrome and has been on the waiting list for years.

"Mali has been on the registry of unmet needs in North Carolina since June of 2018, waiting along with 17,000 others to receive the innovations waiver," Fray said. "This waiver is crucial for ensuring Mali's continued independence and ability to live at home rather than being institutionalized."


The legislature's caucus for intellectual and developmental disabilities has filed a bill to reduce the waiting list by adding 1,000 people to the program.


"Individuals that we heard from today have been on the waiting list for over 10 years, some for 14 years," said Rep. Sarah Crawford, D-Wake. "Some loved ones are concerned that their child with developmental disabilities may not live long enough to even benefit from the Innovations Waiver. We must create more spots."


The bill would also increase pay for direct care workers to $18 per hour, something advocates say is needed to address a shortage of workers.


"It was a number where we can compete with Target and McDonald's," said Talley Wells, executive director of the N.C. Council on Developmental Disabilities. "And we know this is such a more important job — not that those aren't important jobs, but this is about people's lives."


Tuesday's press conference was part of an advocacy session for supporters of people with intellectual and developmental disabilities.


The goal of the session is for family members, direct support professionals as well as advocate organizations to talk about challenges people with disabilities face. 


Continued

Calls Continue for an Increase in Pay for Direct Service Professionals in Illinois

By Hope Gadson, Springfield State Jounal-Register, via The Courier, May 13, 2024


Due to higher turnover rates and vacancies, state legislators and Direct Service Professionals are asking for $3.00 rate wage increase.


The call for a rate increase comes after a $2.50 wage increase for the workers in Fiscal Year 2024.

Skipping an increase for Fiscal Year 2025 means that there have been two consecutive years without wage rate increases.


Guidehouse recommends wage rates for Direct Service Professionals at 150% of the state’s minimum wage. The current wage rate of $17.39 is 139% of the minimum wage.


Lawmakers and advocates cite a high turnover rate as part of the need for the increase. The turnover rates for Direct Service Professional workers have gone up to 50%, which is an increase from the 2022 rate of 41.6%.


And while vacancy rates for Direct Service Professionals have dropped slightly from 18.7% to 17.3%, nearly 58% of Illinois Association of Rehabilitation Facilities surveyed so far in 2024 have reported an increase in vacancies.


Legislation has been drawn up in both the Illinois House and Senate to help increase the rate wage for Direct Service Professionals, but no progress has been made on advancing the legislation thus far.


Continued

VOR Bill Watch:

[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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