Those affected by severe autism require a true continuum of care — from the most inclusive options to disability-specific settings — to meet their lifelong support needs, not only to thrive, but to survive.

By Dan Diamond, Rachel Roubein, and Amy Goldstein, Wahington Post, September 19, 2021

 Trapped in his California house by worsening paralysis, Ady Barkan has a fervent wish: that Congress spend $400 billion so more poor and disabled Americans can get home health aides of their own.

“Home care is keeping me alive. I don’t think I could tolerate my paralysis if I were isolated in a nursing home instead of surrounded by the love of my children and wife every day,” Barkan wrote to The Washington Post, in a message the ALS patient typed using eye movement. “But millions of disabled people and their families aren’t as lucky as me.”

House Democrats say they agree with Barkan’s goal, if not its scope: Their plan to boost home care would cost $190 billion, a funding infusion they argue will be plenty transformative — especially because lawmakers are desperately trying to balance dozens of health priorities, from fighting obesity to pandemic preparedness, in their upcoming $3.5 trillion tax-and-spending package.

That package represents Democrats’ best opportunity in more than a decade to make sweeping alterations to the U.S. health-care system — which is why advocates, lobbyists and lawmakers are wrestling over each possible change, often making their cases in starkly personal terms.

And as Democrats attempt to construct a bill that can pass both chambers of Congress, delicately shifting policies as if they’re Jenga blocks, the legislative logjam is exposing fissures within the party over which priorities are most important for patients, which provisions are most politically beneficial and how much the government should spend.

By Andy Miller, US News and World Report, September 24, 2021

Ernestine "Erma" Bryant likes her job, but the pay is a problem. She works in a caregiver role as a "direct support professional" in Tifton, Georgia, helping people who have intellectual and developmental disabilities with basic functions such as dressing, bathing and eating.

Bryant said it's fulfilling work. "You can help people be successful — people who are confined to the bed," she said. "It gives me joy knowing that I can help that person get out of the house."

But she said she's being paid less than $10 an hour and is trying to get a second job.

In a way, Bryant is an anomaly, having worked as a support professional in the same job for five years in a field with high turnover. Even before the pandemic, the nation had a shortage of direct support professionals working in private homes, group facilities, day programs and other community settings.

Fears of contracting COVID-19 at work in the pandemic have made the caregiver staffing problem worse. Persistent low pay amid a tight U.S. labor market makes it that much harder to attract workers.

Worker shortages across the health care spectrum — from nurses to lower-level staffers — are an unprecedented challenge for hospitals and other medical organizations. The shortage is at an "epic level," said Elizabeth Priaulx, a legal specialist with the National Disability Rights Network.

People with disabilities who have been approved by state Medicaid programs to receive 40 hours a week in caregiver services now often get just 20 hours, Priaulx added. If family members can't help offset the gap, a person may be forced into a nursing home, she said.

In 2019, before COVID erupted, the direct support professional turnover rate was 43% nationally, according to the National Core Indicators collaboration of public developmental disability agencies. In a 2020 survey of providers by the American Network of Community Options and Resources, two-thirds of service providers said they were turning away new referrals. Since staffing shortages became a problem, 40% saw a higher incidence of events that could harm a person's health or safety.

And a KFF survey released last month found that during the pandemic, two-thirds of responding states reported a permanent closure of at least one provider of Medicaid-covered home- and community-based services.

Workers during the pandemic have at times been forced to work 16-hour shifts, said Whitney Fuchs, CEO of InCommunity, an Atlanta-based provider of community services and support to people with developmental disabilities. "This crisis is going to erupt into unsafe, unhealthy situations."

His organization needs to fill 166 openings out of 490 positions. Before the pandemic, the number of job openings was 80. Even managers, who often cover work shifts, are leaving their jobs due to overwork, Fuchs said.

"People are tired constantly," he said. "This is somebody's life we're supporting. There have been adverse patient outcomes," such as medication mistakes.

By Emily Woodruff, Times-Picayune / New Orleans Advocate, via Disability Scoop, September 22, 2021

It was four days after Hurricane Ida, and Grace Hollins worried her son couldn’t take one more day in the heat.Carl, 28, has severe intellectual and developmental disabilities. His seizures are aggravated by the heat, and Hollins had just one syringe of diazepam left to treat them. Adult diapers, usually delivered at the first of the month, were running low. Ida had broken a window and torn a hole through her roof in New Orleans’ St. Roch neighborhood, and mosquitoes were coming in. She didn’t know where to turn.

“It was scary. It was horrible. My son was not understanding,” said Hollins, 55, who also has a disability due to a back injury. “He just couldn’t grasp it. I couldn’t grasp it, either.”

In the aftermath of a hurricane, going without power is difficult. But for people with disabilities and their families, the temporary discomfort can threaten their health and life. At the same time, evacuation can be almost impossible for some, whether it’s due to a lack of money, transportation or few shelter options for people who need a lot of equipment or special conditions to survive.

Ida exposed cracks in Louisiana’s response for those with special needs and how the state addresses situations where extended loss of power or other slow-burning consequences can have devastating consequences. Despite a regular stream of natural disasters in Louisiana, each hurricane uncovers flaws in the system. Systems that are in place, such as special needs registries, do little to address deteriorating situations once power is out and the conditions are unlivable.

“They have to have some type of plan, service for them — period,” said Deatra Hollins, Carl Hollins’ cousin and a licensed practical nurse who was trying to help from afar after evacuating her own family.

“They were forgotten.”

New Orleans and other parishes have lists of residents with special needs. Deatra Hollins added her cousin to the registry right after Ida and tried to get him and his mother to a shelter, but she didn’t get a call back until five days later. The call operator apologized and said the special needs shelters were full of nursing home patients who had been rescued from an evacuation warehouse in Independence.

According to the state, the medical needs shelter in Alexandria was never full and no one was turned away. But Deatra Hollins heard otherwise, and she didn’t want her cousin and aunt to risk a long trip if there was not room.

By Christine Jordan Sexton, Florida Politics, September 20, 2021

More than 22,000 people with intellectual and developmental disabilities are on a waiting list for Medicaid services, budget documents show. That’s despite lawmakers targeting $95 million in additional funding this past spring to reduce the backlog.

Florida Agency for Persons with Disabilities Director of Budget Planning and Administration Rose Salinas told members of a House health care spending panel Monday the agency has sent 621 “offers” to people on the waitlist for the Medicaid waiver program called IBudget. An additional 252 offers to people on the waitlist will be sent Oct. 8.

Salinas could not say how many of the 621 people the state notified were enrolled in the iBudget waiver program.

In addition to those offers, Salinas also said the agency, on average, enrolls about 100 people with intellectual or developmental disabilities who are considered “at-risk” in the iBudget program.

iBudget is a Medicaid waiver program that allows people with intellectual and developmental disabilities to receive home and community-based services they require to keep them out of institutions and in the community.

By David Weissman, The Sun News, September 22, 2021

Myrtle Beach-area parents struggling to care for their children with severe autism or intellectual disabilities now have a facility nearby that can help.

Coastal Autism Academy, a long term residential group home catering to that population ages 5-21, opened in July on Bay Road outside Surfside Beach, according to Doris Singleton, the program’s executive director.

The facility used to house Seacoast Youth Academy, which was for children with severe emotional and behavioral problems, but Singleton said the decision was made to change the name and population it serves based on an assessment of need in South Carolina.

“There’s a need for this level of residential care,” said Singleton, who also serves as executive director for a similar facility called Pine Grove Youth Academy, which has operated in Kershaw County for more than 50 years.

Steve Van Hollen, director of clinical services for the S.C. Department of Disabilities and Special Needs, agreed that this facility does fill a need because there have historically been struggles finding available beds for children with autism whose behavioral issues required removal from their homes.

These group homes are licensed through the S.C. Department of Social Services and are funded almost exclusively via referrals by state agencies, as opposed to psychiatric residential treatment facilities, which are licensed through the S.C. Department of Health and Environmental Controls and funded by Medicaid, Van Hollen explained.

There are no licensed psychiatric residential treatment facilities in Horry County, according to the DHEC website.

The lack of available beds for this population in South Carolina became apparent earlier this year when The Sun News reported that Braedan Sparlin, an 18-year-old man with severe autism, was stuck in a local hospital room, heavily medicated and isolated from his mother, for more than a month due to a lack of availability.

Shortly after that story was published, Sparlin was admitted to Pine Grove Youth Academy and is now back in the Myrtle Beach area as one of the first handful of residents at Coastal Autism Academy, according to his mother, Shawna Sparlin.

“I couldn’t he happier,” she said of having him nearby and getting needed services.

Singleton said their program strongly encourages parental involvement and is licensed for up to 55 residents, but they’re very slowly ramping up as they continue training staff and look to hire additional staff. They had just six residents as of mid-August.

Their training involves techniques on behavior modification, verbal deescalation and health and safety, she added.

Christina Backus, the facility’s admissions coordinator, said all staff are also going through training to become a Registered Behavior Technician, with future plans to bring in a Board Certified Behavior Analyst to monitor them.

By WTHR-13 News Staff, September 22, 2021

A new one-of-a-kind supportive living community for adults with developmental and intellectual disabilities had its grand opening in Indianapolis. Damar Village opened for business Wednesday. The village will house up to 128 adults with disabilities.

The apartments are owned by Damar Services, an organization that for more than 50 years has provided services to children and adults challenged by autism and intellectual, developmental and behavioral disabilities in the Indianapolis area. 

Damar Services saw a need for safe, affordable and supportive housing for disabled adults. It noted that many people with disabilities are outliving their caregivers and need a place to stay. The organization aims to fill that void with its new village. 

Each unit has a kitchen fully equipped with appliances, a living room/dining room area, a guest bathroom and two shared bathrooms, one with a tub, the other a walk-in shower with accommodations for those with special needs.

“They'll be loving life, that they get to hang out in this great place,” said Cindy Agan, whose 34-year-old twin sons are among those moving into Damar Village. Andy has severe autism, and Mike has cerebral palsy and intellectual disabilities.

“They need 24-hour care,” said Agan. “They're not able to live independently, either one of them.”

H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.

VOR OPPOSES:

H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.

Contact us at [email protected]