June 22, 2024

Today is the 25th Anniversary of Olmstead

VOR's Weekly News Update

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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:

Please submit your state reports for


VOR's 2024 Annual Meeting


Sunday, June 23, 2024

3 pm - 6 pm ET / 2 pm - 5 pm CT / 1 pm - 4 pm MT / Noon - 3 pm PT


3 pm - VOR's Annual Members Meeting


Please click here for a link to the Zoom Meeting


An open meeting of the VOR Board of Directors,

discussing the state of our organization and the direction of our advocacy work.

We will announce the outcome of the voting for directors,

present the 2024 VOICE Award,

and introduce

URSULA

The 2024 VOR Teddy Bear


4 pm - Guest Speakers


Joe Macbeth - President, National Association of Direct Support Professionals will share his insights on the workforce and their perspectives on caregiving, the need for safety, security, better training, and a career path,

and how VOR members can advocate to rebuild the DSP workforce.


Jackie Kancir - National Policy Director of the National Council on Severe Autism, Jackie is the mother of a young woman diagnosed with SYNGAP1, an outspoken advocate for severe autism, a frequent blogger at "What We Need Yesterday",

and the co-proprietor (with her daughter Jadyne) of Bunny Egg Acres.


5 pm - Reports from the States


VOR members will update one another on the state of I/DD and autism services in their states. Please join us for this yearly event.

State Reports that have been submitted will be available

on our website, at www.vor.net


We encourage members to submit their state reports to us at info@vor.net


Registration is requested, but not required.

To register, please click here


Please click here for a link to the Zoom Meeting


The 25th Anniversary of Olmstead:

Today is the 25th Anniversary of

The Supreme Court's Decision in Olmstead v. L.C.

To download a copy of the Olmstead Decision, or to read other resources about Olmstead, pleas visit VOR's Olmstead Page.

Click here

or go to

https://www.vor.net/get-help/more-resources/item/olmstead-resources-2

25 Years After Olmstead


Several years ago, I spoke with a first-term member of Congress who had previously worked as a direct support professional (DSP) at a state-operated intermediate care facility in Connecticut. I had hoped that we might finally have had a member of Congress who understood people with severe/profound intellectual disabilities who would support strengthening and revitalizing the ICF system, instead of allowing the continued erosion of a full continuum of care. Sadly, she told me that she thought the ICF system was "unsustainable".


In the years since that meeting, I have often regretted not having asked if she thought the HCBS was sustainable, given that it relies on a shamefully underpaid and under-appreciated workforce, and that federal and state legislators have never provided sufficient funding to meet the requirements of those who rely on HCBS services. I never asked if she thought the private sector that serves HCBS would be able to meet the needs of those who require the highest levels of care, and that by relying solely on the private sector to provide these services, we were leaving no safety net for those who inevitably fall through the cracks in the system.


Nonetheless, I think we all know the answers to those questions.


Granted, we have come a long way, and have accomplished many successes in the last sixty years, since the Kennedy Administration changed the way we serve people with intellectual disabilities, and in the 25 years since the Supreme Court's decision in Olmstead.. We have had some true successes, but we still have a long way to go.


We have yet to build a sustainable system that truly understands the needs of those it is tasked to serve, that has the funding to serve them all, and that provides a safety net to address the system's own intrinsic shortcomings.


Fixing this system is an impossible task. True. But it's a responsibility we must take on. Not just for our loved ones with I/DD and autism, but for so many others who rely on this system, and for generations to come.


So today is the 25th Anniversary of Olmstead. For many, it's a day to celebrate. But for many of us, who admit to both the successes and the failures of the past 25 years, it's a day to recommit to building a better system. A sustainable system, that relies on a healthy, well-paid workforce, and that provides a true safety net for those who cannot be served by the limitations of a privately operated system of Home- and Community-Based Services.

National News:

Residential Facilities Put Kids With IDD At Risk, Senate Investigators Say

By Shaun Heasley, Disability Scoop, June 17, 2024


In a scathing new report, U.S. Senate investigators say that residential treatment facilities serving children with developmental disabilities and other behavioral needs are a hotbed of abuse and neglect.


A two-year investigation conducted by the Senate Committee on Finance found that children regularly experience physical, sexual and verbal abuse at such facilities. Inappropriate use of restraint and seclusion are rampant, there are unsafe and unsanitary conditions, staff are unqualified and inadequate and the behavioral health care that is supposed to be provided is often lacking, according to investigators.


The findings detailed in the 136-page report issued this month focus on four of the nation’s largest providers of residential treatment facilities — Universal Health Services, Acadia Healthcare, Devereux Advanced Behavioral Health and Vivant Behavioral Healthcare. The companies’ offerings include specialized programs aimed at children with intellectual and developmental disabilities and those with various other behavioral and mental health needs.


Investigators reviewed more than 25,000 pages of company documents, media reports, conversations with dozens of experts and they conducted site visits. Their report describes a business model that’s built on maximizing profit at the expense of the children who need care.


“It’s clear that the operating model for these facilities is to warehouse as many kids as possible while keeping costs low in order to maximize profits. Too often, abuse and neglect is the norm at these facilities, and they’re set up to let this happen,” said Sen. Ron Wyden, D-Ore., who chairs the Senate Finance Committee.


Residential treatment facilities often fail to administer the behavioral treatment described in plans, instead leaving children to spend most of their time with unqualified general staff, investigators found. In addition, they said that facilities limit communication between children and their families, keep kids for extended periods, don’t involve guardians in the development of treatment plans and fail to provide quality discharge plans.


Continued

FDA Ban On Shock Devices For Those With Developmental Disabilities Faces New Hurdle

By Michelle Diament, Disability Scoop, June 20, 2024


With the Food and Drug Administration poised to again ban the use of electric shock devices on people with developmental disabilities, advocates are warning that some in Congress are quietly trying to circumvent their plans.


A bill making its way through the U.S. House of Representatives would limit the FDA’s ability to do away with so-called electrical stimulation devices. The devices send electrical shocks through electrodes attached to the skin in order to condition people not to engage in self-injurious or aggressive behaviors.


Currently, the devices are only believed to be used at one facility in the country — the Judge Rotenberg Center in Canton, Mass., which serves children and adults with developmental disabilities as well as those with behavioral and emotional problems.


Earlier this month, a subcommittee approved a rider to a federal appropriations bill that would prevent the FDA from banning a device that’s used by court order. Since all of the individuals participating in shock treatment at the Judge Rotenberg Center are doing so by court order, the provision would effectively nullify any FDA effort to bar the devices.


The Rotenberg Center said in a statement that it supports the rider.


“Electrical stimulation devices (ESDs), used as part of JRC’s Applied Behavior Analysis treatment plan, are a matter of life or death for the small number of our clients who depend on them,” reads the statement. “The parents and guardians for these clients at JRC are committed to ensuring that this treatment remains available to those for whom all other treatment options have been tried and failed.”


Read the full article here

Following up on a story from last month


Three States Have Warned Against Sending Students to an Unregulated Boarding School for Youth With Autism   

By Jennifer Smith-Richards and Jodi. S. Cohen, Co-published by ProPublica and the Connecticut Mirror, June 20, 2024


Two more states are now scrutinizing a New York boarding school for autistic students and have warned school districts about troubling conditions there.


In Connecticut, education officials visited Shrub Oak International School and alerted districts that a state watchdog group determined there were ongoing “serious safety concerns” at the unregulated for-profit private school. Separately, the state’s Department of Developmental Services, which serves residents with intellectual disabilities and autism, has decided to stop sending more students there, an agency spokesperson told ProPublica. That agency described the facility as looking “more akin to a penal institution than an educational campus.”


Washington education authorities, meanwhile, visited Shrub Oak this month and warned school districts to contact the state before considering enrolling students there. Officials are reviewing the state’s relationship with the school, officials told ProPublica.


The scrutiny of Shrub Oak comes as a ProPublica investigation published in May documented how parents and workers repeatedly asked New York authorities to investigate their concerns at the school to no avail.


In Massachusetts, officials have already set in motion a plan to pull students out by the end of this month after realizing that Shrub Oak had not sought New York’s approval to operate a school for students with disabilities. Shrub Oak, which opened in 2018, has had about 85 students from 13 states this school year. About 20 students came from Connecticut, Massachusetts and Washington combined. Tuition this school year is $573,200 for students who require a dedicated aide for most of the day.


No New York government agency oversees Shrub Oak because it is not an approved special-education program and it is not licensed as a residential facility. “From a child health and safety perspective, that is crazy,” said Sarah Eagan, who leads the Connecticut Office of the Child Advocate. “It’s really unsafe — they’re not subject to regular inspections, not subject to licensing standards.”


Continued

State News:

As Iowa's Glenwood Resource Center Shuts Down, Concerns Persist about its Residents' Future

By Katarina Sostaric, Iowa Public Radio, June 21, 2024

On a recent afternoon in Glenwood, Sybil Finken pulled up a photo on her phone of her son, Seth, that was sent by one of his caregivers. In it, Seth is wearing a T-shirt printed to look like a tuxedo and is surrounded by three smiling nursing home staffers.


“She said he’s having a happy day, so she took a picture and sent it to me,” Finken said. “That’s the kind of stuff they wouldn’t do at GRC. Everything was very protected. It’s a little looser now.”


She said Seth lived at Glenwood Resource Center, a state-run care facility for people with severe intellectual disabilities, for nearly 40 years. He got meningitis as a baby, which left him deaf, blind, and needing a wheelchair. Finken said Seth had problems with seizures in 2023 that landed him in the hospital, and after that, GRC wouldn’t let him back in.


State leaders had already announced in 2022 that they would close Glenwood Resource Center, and on Tuesday, they completed the two-year process of moving residents out. The southwest Iowa facility will officially close on June 30, but Iowans who have had experience with GRC over the years are still worried about what the future holds for former residents and for the community of Glenwood.


Seth moved into a nursing home in Glenwood about a year ago.


“It was hard at first, because the people who cared for him didn’t really know his procedures,” Finken said. “And then they moved him to another house and he had to go through that again. So it’s just been a little hard for him to adapt to a new place. But he’s getting good care.”


Finken, a long-time advocate for keeping the facility open, said the closure is a “terrible mistake.” While she said Seth’s life hasn’t changed very much since he moved into a nursing home, Finken said leaving GRC can be dangerous for some patients.


“I hope they find a safe place to be,” she said.


Since the closure began, 14 people died within one year of moving out of GRC, according to the Iowa Department of Health and Human Services. Five of them had been moved directly into hospice from GRC. Five other residents died at Glenwood before they could leave. Information from the state shows cancer, respiratory conditions, cardiac arrest and other chronic illnesses were among the causes of death.


Brady Werger, who lived at GRC for about seven years before moving out in 2018, said the state should continue to look out for former residents to ensure they’re properly cared for.


“I am scared with some of the clients that have moved out of Glenwood because I have seen some of them succeed really well, and I’ve seen some of them backtrack because they’re not getting the services they need,” he said.


Werger credits GRC with helping him get to where he is now: living in his own apartment in Waverly, and working two jobs with the support of caregivers who help him with things like cooking and managing money. He said the human experimentation was “horribly wrong,” but the state should have just addressed those problems and kept the facility open.


“It’s tough,” Werger said. “I mean, when I found out about them closing, I was almost in tears.”


Read the full article here

As Disabled Texans Wait for Services, Low Caregiver Wages Exacerbate Staffing Shortages

By Tracy Idell Hamilton, San Antonio Report, June 17, 2024


The state of Texas manages a waiting list of residents with intellectual and developmental disabilities seeking services that currently has close to 130,000 people on it. Many wait for a decade or longer to get into a group home or day program.


That’s in part because the agencies that provide those services are facing a critical shortage of caregivers to work with them.


Texas reimburses those agencies $10.60 an hour for caregivers and most pay that rate or only slightly higher to employees who work directly with some of the state’s most vulnerable residents.


During the last legislative session, state lawmakers raised the pay of these community-based caregivers — who provide care in people’s homes, group homes and day care centers — to $10.60 from $8.11 an hour. But it also raised pay for workers at state hospitals and state-supported living centers to a minimum of $17.50 an hour in an effort to fill critical staffing shortages at those institutions.


That pay imbalance led some community-based caregivers to seek higher-paying state jobs, further impacting the shortage, said Jelynne LeBlanc Jamison, president and CEO of the Center for Health Care Services (CHCS), which provides mental health, developmental disability and substance abuse services for adults, children, older adults and veterans in Bexar County.


Higher pay at state-run institutions was definitely needed, she said. “I just wish, with the [budget] surplus that we’ve been able to enjoy in the state of Texas,” lawmakers also prioritized community-based caregiving of “this very, very vulnerable population.”


‘On the backs of caregivers’

Intellectual or developmental disabilities (IDD) are disorders usually present at birth, although they can be triggered by brain injuries, that negatively affect an individual’s physical, intellectual and emotional development. These disorders include autism, Down syndrome, cerebral palsy, fetal alcohol syndrome and spina bifida, among others.


While it depends on the severity of the disorder, most people with these disabilities cannot live independently as adults. Many families in Texas sign up for the wait list immediately upon getting a diagnosis for their child, knowing it can be more than a decade before they are eligible for services.


The goal of community-based care, which is far less expensive than institutional care, is to assist this population not only with the tasks of daily living but also with individual goals that will help them live as independently as possible. Depending on the person, that runs the gamut from gaining employment to learning how to use the stove or tie shoelaces.


Problems within Texas’ system of care for people with intellectual and developmental disabilities are well documented. In 2022, the Austin-American Statesman published the results of a year-long investigation, detailing the “crisis and violence” inside the system, including violations of the rights of caregivers.


The series detailed how the state’s Medicaid waiver system — created more than four decades ago as an alternative to institutional care — “is jeopardizing the safety of thousands of vulnerable clients and their caregivers. Built on the backs of low-paid, overworked and often undertrained caregivers, the system is collapsing from decades of underfunding and lax oversight.”


Continued

New Jersey - Emergency Housing for NJ Kids with Disabilities is So Scarce 'Families Often Just Give Up'

By Gene Myers, NorthJersey,com June 20, 2024


Freehold’s Lisa Fitton said she faced terror every day for years.


She hid in her car, behind neighbor’s vehicles and in closets. Caring for her son, Andrew − whose severe autism led to violent outbursts − was almost impossibly hard for Fitton, who was on her own.


“I got to the point that I was afraid of my son," she recounted in an interview. "When he would go after me, I would run out of the house. It was impossible to do it alone and I just couldn't get the help I needed."


New Jersey's Children's System of Care is supposed to offer a lifeline in such extreme cases. The program is tasked with providing emergency housing and treatment for children with severe disabilities whose behavior can pose a danger to loved ones − or themselves.


But families and disability advocates say the system is woefully underfunded, sometimes taking months or years to offer help to parents in crisis. And a labor shortage facing healthcare providers of all types since the COVID pandemic means temporary housing is even scarcer than before.


While an estimated 13,000 children and teens with disabilities take part in various CSOC programs, the state has just 353 emergency beds set aside for the population across New Jersey. Staffing shortages mean there are currently only 187 slots actually available, the state acknowledges.


“There is a tremendous, crisis-level shortfall of beds for individuals that are under 21 that are in need ... because of having severe and challenging, dangerous behaviors," said Lisa McCauley Parles, the mother of a child with a developmental disability and a Clark-based lawyer specializing in such cases.


"The waits are very, very long, and the process is so complicated and cumbersome that families often just give up.”


The state is aware of the challenges and working to address them, said Jason Butkowski, a spokesperson for the Department of Children and Families, which oversees CSOC. Gov. Phil Murphy's proposed budget includes an additional $7.3 million to expand respite services.


With a more than $800 million budget, the Children's System of Care is charged with providing behavioral health care for tens of thousands of young New Jerseyans with emotional and mental health needs, substance use challenges and intellectual or developmental disabilities.


Emergency and out-of-home care account for just a sliver of the services it provides but can be crucial in times of need, say advocates. CSOC provides counseling and temporary placements in group homes, foster care or psychiatric facilities, where kids are supposed to get treatment until it's safe to reunite them with their loved ones.


"It is the single most painful decision you will ever make, and you'll never get over it," said Parles. "You do everything you can to not ask for that help because the system, and particularly the Children's System of Care, makes you feel like a failure because the goal is that you raise your children."


Fitton’s son, Andrew, now 24, can be aggressive. He outsized his petite mom by the time he entered his teens. She has scars from multiple attacks when he took chunks of flesh out of her arms with his teeth.


She asked the state to intervene with a temporary placement but says she never got the help she was seeking."We were on a waiting list for some kind of stabilization bed, residential treatment, whatever," she said. "We were on that for months, and yet every day was like a test of survival. His behaviors were off the wall."


While the family waited for a placement, things got worse. Fitton said her husband moved to California with their other child, leaving her to manage Andrew's care alone. When things got out of hand she called the police for help, she said. They would bring Andrew to a local emergency room, though that relief was only temporary.


Fitton was eventually approved for in-home help by CSOC, but a therapist either never showed up or canceled at the last minute, the mother said. Finally, about two years after her request, Andrew was placed in a group home for people with developmental disabilities.


Read the full article here

Montana - FBI Investigates Autism Centers, Which Have Exploded In Growth

By Deena Winter, Minnesota Reformer (via Disability Scoop), June 19, 2024


The FBI is investigating possible Medicaid fraud in the treatment of autism in Minnesota, according to sources with knowledge of the investigation and who were granted anonymity because they’re not authorized to speak to the media.


Details of the investigation are unknown, but what’s certain is that growth of spending on the autism program has exploded in recent years. The number of providers — who diagnose and treat people with autism spectrum disorder — has increased 700% in the past five years, climbing from 41 providers in 2018 to 328 last year.


The amount paid to providers during that time has increased 3,000%, from about $6 million to nearly $192 million — according to data provided to the Minnesota Reformer by the Minnesota Department of Human Services, which administers Minnesota’s Medicaid health insurance program for low-income people and people with disabilities.


Department of Human Services Assistant Commissioner Natasha Merz said the growth of the autism program has been “pretty consistent” with other DHS programs, such as housing stabilization services, a new Medical Assistance benefit to help people with disabilities and seniors find and keep housing. (Some autism centers advertise both of those services.)


“I don’t think we are surprised or particularly disturbed by the rate of growth,” Merz said. “We know that having early intervention and access to service is a really, really important part of putting these kiddos on a good trajectory for the rest of their lives.”


She added, “Anytime we’re operating Medicaid programs, we have to ensure we’re good stewards of taxpayer money, and that we have the right level of protections in place against fraud, waste and abuse.”


Continued

Related story:

Montana - Child Development Center Closures Spark Worry about Autism Testing

By Dominic Vitiello, NBC News Montana, June 20, 2024


Families are raising concerns about how to get children tested and diagnosed with autism following a closure announcement from the Child Development Center in Kalispell and Missoula.


The center didn't just provide early intervention services for children with autism. Many families also receive referrals from doctors allowing the center to test and diagnose autism.


"We can't afford to go out of state, we can't afford to go to other places to get our children diagnosed with autism. When he turns 6, I have to go back in and get him retested for autism. Well, if there's no CDC, I really don't know where we're going to go," former client Orissa Gohl said.


On Facebook, Cameron Richmond said it took her son two years to get a diagnosis, and she wasn't alone.


Sandy Williams said it took her even longer, at three years, with numerous doctor appointments and three assessments just to get her granddaughter in for a diagnosis.


"What are we supposed to do now? I mean, what's going to happen with our kids’ SSI?" Gohl said.

SSI is supplemental security income for those diagnosed with a disability. To qualify, a child needs a diagnosis and has to be re-tested at age 6.


Continued

California - ‘I Try To Stay Strong’: Mom Struggles To Get Diagnosis for Son’s Developmental Problems

By Sejal Parekh, KFF Health News, June 12, 2024  


Four-year-old Ahmeir Diaz-Thornton couldn’t sit still in class and rarely ate his lunch. While his preschool classmates spoke in perfect sentences, Ahmeir had trouble pronouncing words.


Ahmeir’s preschool teacher relayed her concerns to his mother, Kanika Thornton, who was already worried about Ahmeir’s refusal to eat anything but yogurt, Chef Boyardee spaghetti, oatmeal, and applesauce. He also sometimes hit himself and others to cope with the frustration of not being able to communicate, she said.


Thornton took her son, who is on Medi-Cal, California’s Medicaid program, which covers low-income families, to his pediatrician. Then he was evaluated by a school district official, a speech therapist, and the pediatrician — again. Along the way, Thornton consulted teachers, case managers, and social service workers.


Ten months later, she still doesn’t have an accurate diagnosis for Ahmeir.


“I felt like I failed my child, and I don’t want to feel that,” said Thornton, 30, who has been juggling Ahmeir’s behavior and appointments on top of her pregnancy and caring for her two other children.


“Some days I don’t eat because he doesn’t eat,” said Thornton from her home in Alameda County in the San Francisco Bay Area. “I don’t want to hurt my unborn child. So I try to eat some crackers and cheese and stuff, but I don’t eat a meal because he doesn’t eat a meal.”


Seeking a diagnosis for a child’s behavioral problems can be challenging for any family as they navigate complicated medical and educational systems that don’t communicate effectively with parents, let alone each other.


A common obstacle families face is landing an appointment with one of a limited number of developmental specialists. It is particularly difficult for families with Medi-Cal, whose access to specialists is even more restricted than for patients with private insurance.


As they await their turn, they boomerang among counselors, therapists, and school officials who address isolated symptoms, often without making progress toward an overall diagnosis.


Obtaining a timely diagnosis for autism, anxiety, attention-deficit/hyperactivity disorder, or other behavioral disorders is important for children and their parents, said Christina Buysse, a clinical associate professor in developmental and behavioral pediatrics at Stanford University.


“Parent stress levels go down when a child is diagnosed early,” because they learn how to manage their child’s behaviors, she said.


Intervening early can also help retrain a child’s brain quickly and avoid lifelong consequences of developmental delays, said Adiaha Spinks-Franklin, president of the Society for Developmental and Behavioral Pediatrics.


“A speech and language delay at the age of 2 can put a child at risk of reading comprehension problems in the third grade,” she said.


Continued

Indiana - Families with Medically Complex Children Scrambling after Last-Minute Guidance from State

By Kayla Dwyer and Hayleigh Colombo, The Indianapolis Star, June 21, 2024


A late-stage update to the Indiana Family and Social Services Administration's guidance for families with medically complex children has those families scrambling, again.


For the last six months, families have been working on their plans to transition from a system where parents could get paid hourly to provide necessary care for their children with complex conditions to a "structured family caregiving" system, where parents get a daily stipend that for most families works out to far less compensation.


FSSA announced this transition in January as a cost-saving measure after state budget writers discovered a billion-dollar Medicaid forecasting error. The change, which would help save the state nearly $300 million, goes into effect July 1.


The more "skilled" tasks like administering medicine and feeding tubes requires a home health aide license and gets billed by the hour. Parents say they've been encouraged by their care management agencies and in meetings with FSSA officials to go through this training and apply to take on those home health aide hours themselves.


In other words, they assumed the same parent could be both the "principal caregiver" under the structured family caregiving program as well as take on home-health-aide hours.


But an FSSA guidance document was updated on Tuesday, a few days after families submitted their care plans, clarifying that the same individual cannot perform both services.


"Changing the rules at the 11th hour and burying the changes in a two-month old document and not directly notifying providers is unconscionable," Noblesville mom Jennifer Dewitt said during a Zoom press conference Thursday. "Having an 11th hour curveball coming at us leaves little time to plan and respond. This latest curveball is going to harm these families."


FSSA disputes that the clarification is a policy change, telling IndyStar in a statement that "Medicaid has never allowed the use of taxpayer dollars to pay the same person twice for delivering essentially the same service."


Many of these families have been getting organized since the policy shift in January. They got together on social media; they rallied at the Statehouse multiple times to protest these changes; they formed a group called Indiana Families United for Care, which put on Thursday's news conference.


They've even sued the state to try to stop these changes, with the help of the ACLU and Indiana Disability Rights.


This latest development sends families who were counting on one person being able to serve all their child's needs into a tailspin, trying to arrange for a second person to provide some of the care.


For a two-parent household where one parent works a full-time job and the other was planning on being the caregiver and taking on home-health-aide hours, this now means either the other parent needs to get rapidly trained up, or the family needs to find a professional to fill these hours, in an industry where nursing aides are increasingly sparse.


Continued

Past Wrongs Leave Little Confidence in the Next Chapter of Nebraska Developmental Disability Programs

By Aaron Bonderson, Nebraska Public Media, June 18, 2024


Near St. Paul, Gage Scarborough sits on the couch at his dad’s farmhouse in central Nebraska, watching his favorite all-star wrestlers duke it out on a replay from earlier in the week.


The 22-year-old weighs about 70 lbs. He is a big fan of Cody Rhodes and asked his dad for a version of his championship belt.


Next to Gage on the couch is licensed practical nurse Brenda Lieb. She helps him with daily activities like medication, hygiene and nutrition.


Gage was born with genetic birth defects and later diagnosed with type two micro-plasia dwarfism. He can’t live independently.


But his care is in jeopardy this fall, and the family isn’t sure what the future holds for Gage.


The Scarborough’s are one of several Nebraska families concerned about Gov. Jim Pillen’s promise to eliminate an extensive waitlist for intellectual and developmental disability services. Those services include group homes, day programs, respite care, occupational therapy, and more. None are covered by Medicaid.

To get benefits and services, 2,700 people with intellectual and developmental disabilities and their families have been on a wait list for six to eight years. That’s according to the Division of Developmental Disabilities with the Nebraska Department of Health and Human Services (DHHS).


In March, however, Gov. Pillen announced his intentions to eliminate the list, also called a registry, and enter people with intellectual and developmental disabilities into programs.


“This is the first time in Nebraska history the DD registry will be eliminated,” Pillen said in a statement.

The state tried and failed to eliminate the waitlist several other times in recent decades.


Families and advocates don’t think this time will be any different. Plus, Pillen’s plan is eliminating the waitlist by offering people fewer services than they signed up for, advocates said.


In April and May, DHHS held listening tours to explain the plan and hear questions.


With more than 170 people watching a virtual Zoom session, questions concerning funding for the program, availability of services and more piled up in the chat.


During those sessions, Director of the Division on Developmental Disabilities, Tony Green, said the process to phase out the waitlist is scheduled to take 12-18 months.

Gage has been on the waiting list for better benefits and services for the last seven years.


His parents said that St. Paul Public Schools did a great job of taking care of Gage. When he was 21, he aged out of school. In the first full year without school for Gage, his father, who is a self-employed electrician, said the family has been concerned about keeping his support during the day.


It costs the family about $3,300 total per month to have an independent provider like Lieb and to take him to Duet. That’s almost $40,000 a year. They receive a little more than $30,000 in benefits from the state, through a program called the Aged and Disabled waiver.


By September, they won’t be able to afford Lieb’s help anymore. That’s when Gage’s state benefits are expected to run dry, and he won’t get a new round of payments until January.


“It's the elephant in the room that's been scary,” Scarborough said.


The DHHS website isn’t intuitive for finding information, Scarborough said. He said employees want to be helpful but sometimes don’t understand the department’s systems and several waiver programs.

The Scarborough’s also didn’t receive a letter that was supposed to outline the different services and benefits available once Gage aged out of school.


Scarborough also questioned the state’s assessment of needs process, because it classifies Gage as an intermediate level of care. But his father said Gage needs help with nearly every aspect of daily life and can’t be left alone for too long.


Jennifer McDonald works as a human resources specialist in Grand Island, which makes for a shorter trip from work to pick up Gage from his day program.


The benefits paying for Gage’s program will run out this fall, she said. But Duet has agreed to take care of him for unbillable hours, if necessary.


Both parents said working from home to watch Gage is not ideal. They have other bills to pay, and oftentimes their jobs demand in-person work.


McDonald said the developmental disability system needs to be overhauled.


“If there is some kind of provider book like it is for licensed daycare providers, they have a book that you can look for a daycare provider,” McDonald said. “You don't have anything with disability kids to look at. You have to find one yourself, which is a huge challenge for kids with disabilities.”


Read the full article here

North Carolina - Stuck in a Hospital, Hoping for a Place of His Own

By Rose Hoban, North Carolina Health News, June 20, 2024


Tylor Freeman would like to go home.


His problem? There’s no home to go to. 


Instead, the 29-year-old has been cooling his heels at WakeMed hospital in Raleigh for more than 100 days.


Freeman’s odyssey began last fall when he needed to have a minor medical procedure. He has cerebral palsy, along with having a history of anxiety and depression. He was living in supported housing with a roommate in Burlington, a situation where he alleges that the caregiver working with him was abusing alcohol. 


So, after his procedure was completed at a hospital in Concord, he refused to return to where he had been living. His family’s dynamics preclude him living with any immediate family members.


Because he didn’t have a home to return to, he first tried living with friends out of state, but that became complicated for him and for his friends, given his extensive care needs and the limitations of what state Medicaid programs can pay for outside of North Carolina. Freeman uses a power wheelchair and needs assistance with everyday activities such as bathing, using the bathroom, dressing, preparing food and more. 


“I can feed myself as long as it’s cut up. Soup, cereal, that’s kind of tough,” Freeman said. In the past, he said, he’s been able to use a urinary bag system, as long as it doesn’t leak. “So I could be left alone for a couple of hours, as long as I’m in my wheelchair.”


Freeman spent time in a South Carolina hospital, which eventually threatened to discharge him to a homeless shelter. That’s when friends in Raleigh suggested he make his way to the Triangle. On March 5, he got onto a Greyhound and made his way to WakeMed hospital, where he was admitted to be treated for bladder and body pain. 


That’s where he remains, even though his medical issues were taken care of long ago. 

Freeman’s not alone in his predicament.


For years, people with disabilities have been getting stuck in treatment facilities across North Carolina, even as they strive for the opportunity to live independently. 


The federal Americans With Disabilities Act, passed in 1990, and subsequent Supreme Court and state court rulings require the state to provide services and housing to people with mental health disabilities. One of those rulings is part of a 2012 lawsuit settlement with the U.S. Department of Justice and North Carolina to ensure that such populations are able to live in the least restrictive settings of their choice. The landmark U.S. Supreme Court Olmstead decision in 1999 laid the foundation for such a settlement by prohibiting the unnecessary segregation of people with disabilities and underscoring their right to receive services within their communities.


Bumping up against all those legal mandates is a profound lack of affordable housing in North Carolina, including in Wake County — where the median home cost $474,750 in April, and rent easily tops $1,200 a month (according to Zillow). Both hospital and state officials say that’s the primary reason they’ve had trouble finding a place for Freeman, on top of a shortage of direct service professionals to provide him with the help he needs to live independently. 


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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