Bill, 25, was diagnosed with Angelman Syndrome when he was 17-years old. It’s a developmental disability caused by a chromosomal defect.
He’s non-verbal, but uses an electronic device to convey wants and needs. Bill also has mental delay and suffers from seizures. Although the disorder is often characterized by the inability to walk, Bill is able to get around on his own.
“He’s relatively high functioning,” Linda Yoakam said. “It’s considered a rare neurological disorder, but I question how rare it actually is.”
According to the Angelman Syndrome Foundation, the disorder occurs in one in every 15,000 births, although it’s often misdiagnosed as cerebral palsy or autism.
The test to diagnose Angelman Syndrome was only developed in the past 10 years, so official data about its prevalence is unknown.
When Bill turned 22-years old, he was no longer eligible to attend the Aurora Education Center, which teaches life skills training for post-high school students. State law requires that school districts provide education to special needs students until the day before they turn 22.
Today, Bill attends a day program at the Keeler Center, an entity of the Association for Individual Development. Three days a week he goes to Keeler Center and the rest of the time he’s at home where his dad, Marvin, cares for him.
The system worked well until recently. With Linda and Marvin in their 60s, the reality that Bill won’t live at home forever has crept into the forefront of their minds. Marvin’s health problems have made it increasingly difficult for him to care for Bill at home.
“He has major issues with his back, and is on crutches and a walker,” Linda Yoakam said. “If something happened to one of us, we would be in crisis mode.”
For Bill, moving out isn’t a matter of saving some money, securing a job and finding his own place, like many 20-somethings. Instead, his parents are left at the mercy of the debt-ridden state, waiting until their son gets approved for a Medicaid-funded waiver that will help him move out.
And so, like more than 2,000 families in DuPage County, the family waits.
Waiting for word
Prioritization of Urgency of Need for Services, commonly called PUNS, is an organization system overseen by the state’s Department of Human Services.
Individuals with developmental disabilities are entered into the database, usually by families, friends or caseworkers, and categorized based on need of services and severity of disabilities.
In DuPage County alone, there are more than 2,000 people waiting to receive Medicaid funding that will allow them to move into residential programs. Throughout the state, there are more than 22,200 people waiting for funding to get necessary services, be they residential or day programs, life skills training, respite, therapy and more.
For years, the appropriate funds were released at a relatively steady rate, but as the state plunged deeper into debt, the Medicaid distributions began to dwindle. Today, things are essentially at a standstill, said Kim Zoeller, president and CEO of Ray Graham Association, which provides a variety of services to people with disabilities in DuPage County.
“The economy has played a big role in why they aren’t getting waivers for residential placement,” she said.
Right now, the only people receiving funding for residential programs are those families facing emergency situations, Zoeller said. In Illinois, “emergency” means the person will be left homeless.
“It must feel like to families that there is this black hole,” Zoeller said. “We don’t have that much leverage to advocate for a person.”
The Yoakams placed Bill on the PUNS list when he was still in elementary school at the encouragement of a school case worker. Bill recently moved up on the list because of his father’s health problems. Although she’s not ready to see him leave home, if Bill’s name came up on the list and the funds became available, Linda said she’d jump at the chance to secure him placement in a residential program.
“My worst fear is that something would happen to us and he’d be yanked out of this home and placed on an emergency basis,” she said. “I’d like to see a placement in the next five years. Something could happen to us at any time. We’re at that age.”
Linda said Bill doesn’t transition easily and she worried about the effect an emergency placement might have on him.
“He has anxiety and can’t calm down enough to relax,” she said.
Changes to the state
As futile as conditions may seem for families, things are slowly beginning to change and momentum is starting to build, Zoeller said.
In June 2011, a federal judge approved a settlement to a long-running class action lawsuit between the state and people with developmental disabilities who were unhappy with their living conditions.
Commonly known as the Ligas Lawsuit, the settlement gave people with disabilities a voice regarding where they live and what services they receive, and ruled that people who want to receive services in their own community can have that option.
Shortly after the settlement, Gov. Pat Quinn announced two state-operated institutions would be closed by the end of 2012 – Jacksonville Developmental Center and Choate Mental Health Center, both located in southern Illinois.
Combined, the facilities housed more than 400 people who are now slowly being relocated to community-based residential programs.
The Ligas decision and Quinn’s move to close two state institutions shifts the momentum toward a focus on community-based residential services and programs. Examples of these programs are the CILAs, group homes or other community-living situations operated by local providers like Ray Graham Association, Seguin Services of Cicero and more.
People who live in community-based residential programs have a higher quality of life than people living in institutions, Zoeller said. Plus, from the perspective of a state deep in the red, the economics are better.
It costs about $160,000 for a person to live in a state-operated institution. It costs about $50,000 for that same person to live in a community-based program, according to a study conducted by Don Moss & Associates of Springfield.
A glimmer of hope?
In a state where financial support is trickling down to families at what might seem like a snail’s pace, and there are thousands of people waiting for this support, the situation seems bleak, but Zoeller said there are things the families can do to make things better.
One of the first things is families need to do is get on the PUNs list as early as possible and keep it updated every year, she said.
“The family often thinks, ‘I don’t have to worry about that for a long time,’ but it’s so important,” she said.
Aside from the PUNs list, she said families need to get aggressive, write to local legislators and call their representatives to tell them about their situations.
“It’s a hard situation for families right now,” she said. “They’re responsible for making legislators know. It is he who screams the loudest who gets served. Families have got to create change.”
By Sarah Small, ssmall@mysuburbanlife.com
Suburban Life Publications
Posted Aug 10, 2012 @ 01:00 PM
http://www.mysuburbanlife.com/wooddale/topstories/x442234262/Families-with-disabled-young-adults-cope-with-funding-changes-at-state-level
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