‘A travesty’ — disabled adults await funds for services
from news.medill.northwestern.edu by Anthonia Akitunde
Anthonia Akitunde/MEDILL - Students in Gateway to Learning fold bags into boxes for 2 cents per box as part of their vocational worktraining. However, with state funding for developmental disabilities declining, programs like Gateway's expect drastic cuts in the coming months
Students gather around large mixing bowls set atop the high kitchen tables in the classroom. They smile as they stir batter with an electric mixer, chattering among themselves and with their teachers. Laughter can be heard over the loud whir of the mixer.
A staff member asks a student what she is making.
“Strawberry cake,” she responds, the words barely intelligible, her small mouth straining to form each raspy syllable. A fellow classmate staggers over to hug the staff member, his blue eyes bulging, his mouth hanging open.
These students are in an adult day training program at Gateway to Learning in Chicago’s Lincoln Square neighborhood. All have been diagnosed with some form of a developmental or behavioral disorder. Gateway offers students life training to enter the mainstream world.
Now Gateway faces cutbacks that could end its adult pre-vocational programs based in food services. The program has already used $80,000, more than half of its reserve funds, to keep the center open for these adult students, said executive director Cheryl Hennelly.
“We should be finding out by July if they’re going to cut us again,” Hennelly said. “If they cut us, we’d have to close. It would be too detrimental.” The “they” Hennelly refers to is the Department of Human Service, which funds developmental disability services through grants.
The department received the $6 billion it sought for the 2010 fiscal year despite the state’s financial crisis. Although almost $1.6 billion would support developmental disabilities, many special needs advocates wonder whether that money will continue funding adult programs.
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Hennelly said Gateway has not benefited from past increases in developmental disabilities funding. Adult programs are not guaranteed funding like special needs public schools and children’s programs that receive funding through the Illinois State Board of Education. For adults with developmentally disabilities graduating from high school, funding shortages may mean a gap in services between school and adulthood .
Individuals aged three to the day before their 22nd birthdays receive speech and occupational therapy, social work and medical assistance for free or low-costs, Hennelly said. But when they turn 22, there is a rate placed on how many hours of instruction or support they can receive. For day training at Gateway, each adult receives state funding of $1,194.85 ($10.39/hour and 115 hours a month). In the 15 years Hennelly has been executive director the rate had only increased by $0.25.
“They’re still disabled,” Hennelly said. “What makes them any different when they turn 22?”
Feeling it right where it hurts
Programs benefiting the developmentally disabled already felt the crunch prior to the new state budget passed earlier this week. Since legislators did not accept a permanent or temporary income tax hike to increase state revenue, services for the developmentally disabled population will see cuts of 50 percent or more, said Tom Paulauski, executive director of advocacy group the Arc of Illinois.
Permanent revenue needs to be implemented, or it can take years for people with disabilities to see service, he said. Budget specifics will be available next week, but meanwhile Paulauski said information from both the governor and the Division of Developmental Disabilities office has Illinois receiving less funds than it did last year. This would cause a decrease in services across the board.
“It would be naive to think anyone new will be served,” not to speak of the more than 17,000 individuals already on the waiting list, Paulauski said.
A few grant programs already suffered an almost 12 percent cut in services in January 2009. Programs such as Gateway that were reliant on the Department of Human Services’ developmentally disabled grants could become extinct, he said.
And if some programs aren’t eliminated, substantial cuts will delay services and limit the number of people who can be helped, said Dr. Tamar Heller, professor and head of the Department of Disability and Human Development at the University of Illinois at Chicago.
Less money, more problems
In March 2009, Gateway to Learning had not received $160,000 in back payments from the state comptroller office. A lack of money had “caused delays in payments to vendors,” said Tom Green, a spokesman for the Department of Human Services. After a recent application for hardship funds, Gateway received money for the months of December, January and February within two weeks. However, it still has not received funds for March, April, and May.
If grant funding continues to be squeezed, special needs individuals and their families won’t have the support necessary to lead theirlives, Heller said. This includes group homes and day training programs like Gateway that teach students life skills like washing dishes, cooking for themselves and hygiene.
Since many special needs adults are unemployed, some end up sitting at home if caregivers do not receive funding from the state. For those who can’t watch themselves, a parent may have to quit work to stay at home with the child. Teachers and support staff face unemployment or dramatically cut wages as funding becomes scarce.
“People can’t afford to lose their jobs,” Hennelly said, but “that’s what the end result will be.”
Charlotte Cronin, executive director of Family Support Network of Illinois, termed the situation “a travesty.”
“There’s hundreds, maybe thousands of young (disabled) people graduating from high school to no services,” Cronin said. “Our school systems invest incredible numbers of dollars and heart into educating these young people… If the budget is cut, there won’t be funding to even support the little trickle we had before of kids transitioning from school.”
According to advocates, educators and community service providers, funding became an issue when the Department of Human Services changed the system in 2008.
(See “How the system works”)
The change has created a lag in services for students who need continued services immediately after graduation, said Athanasia Alexander, guidance counselor at Northside Learning Center, a Chicago high school for children with special needs.
“It’s very difficult and disheartening because the parents have done everything they can do,” Alexander said, “and then then they find out that their child might be at home for quite a few months after graduation.”
Playing the waiting game
What used to be a six-month to one-year wait can grow to three or more years even if you start the funding process at 18, said Gateway’s executive director.
People classified as having “emergency needs,” such as a care giver’s death, are more likely to receive funds.
“We got very lucky” when her nephew was considered an emergency case, said Joyce Smith, guardian of her 40-year-old nephew with Down Syndrome. He was placed in a residential home after his original guardian died.
For the remaining 17,000 on the waiting list who are not so “lucky,” the options are limited.
“Providers sometimes fund services through local city and county funds or charitable organizations,” said Green of the Department of Human Services. But he admitted those funds are also limited.
Navigating the system, while difficult, can lead to success, said UIC’s Heller.
Her own sister lives in Trinity Services, a group home for people with disabilities in Joliet, Ill. Though the effort to move her from a nursing home to Trinity “wasn’t easy” because of her sister’s severe medical issues, the results speak for themselves, Heller said.
Daphne Ron has cerebral palsy and was an overweight diabetic needing four insulin shots a day when she lived at a nursing home she said was “so horrible.” But after moving into Trinity, Ron is no longer a diabetic and lost 50 pounds.
“I love it” at Trinity, Ron said in a phone interview. “People here are nice.”
Looking forward
As adult students engage in end-of-the-day activities at Gateway last week Hennelly claims she knows of three other day training programs on the verge of closing.
That would be a “disaster for parents,” said Smith, a caregiver for a Gateway student.
“There has to be programs,” Smith said, before taking her nephew home for the day. “Not everyone is going to be able to take care of special needs adults and children without help.”
