LINCOLN — Erin Phillips has made great strides in the three years since moving out of her parents’ home.
The 31-year-old has learned how to do her laundry entirely on her own. She takes showers with only a little nudging. She cleans her own bedroom and bathroom.
That’s on top of working part time at a local grocery store and speaking out as an advocate for herself and other Nebraskans with developmental disabilities.
But the Lincoln woman could have been further down the road toward independence if she had not spent seven years “on the wait” for developmental disability services from the state.
“We wanted to normalize her life, we wanted her to be as independent as she could be, but I couldn’t do anything while she was on a waiting list,” said Mary Phillips, Erin’s mother.
Waiting for developmental disability services has been the norm for decades in Nebraska, despite a 1991 state law promising services for everyone needing them. More than 2,300 people are on a waiting list for services including job coaching, training workshops, group homes, residential services, respite care and more.
Now disability advocates led by The Arc of Nebraska have launched a campaign to end the waiting list and ensure that Nebraskans with developmental disabilities get timely access to services. The effort includes a petition and several community events.
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Edison McDonald, executive director of The Arc, said Nebraska needs to figure out a way to fulfill that earlier commitment and get services for those on the list.
“We’ve had senators promise and promise and promise,” he said. “We’re still waiting here. We’ve waited too long.”
State officials have tried to address the waiting list through the years and have made progress at times, he said. But every reduction has been short-lived.
The only time Nebraska eliminated the waiting list was in 1995. Then-Gov. Ben Nelson pushed a plan under which services were offered to everyone on the list as of July 1 that year.
But a new list began on July 2, and by the end of August 1995, there were 400 people on it.
The 1991 law promising services was followed by another that called for serving everyone by July 1, 2000. Four years after missing that target, lawmakers pushed back the goal to July 1, 2010. Nebraska missed the new goal as well.
The last major push to address the waiting list came a decade ago, after the Beatrice State Developmental Center, the state institution for developmentally disabled people, lost federal funding because of widespread and repeated care problems.
That focused public attention on the broader problems facing Nebraskans with developmental disabilities, which are defined as severe, chronic mental or physical impairments that begin before age 22.
In 2009, state lawmakers approved $15 million to help shrink the waiting list, which stood at 2,006 people as of June that year.
The current waiting list has 2,325 people, according to the Nebraska Department of Health and Human Services. That includes 840 people who are getting some services, generally day programs, but waiting for others. The oldest application on the list dates back to 2012.
Courtney Miller, director of the Division of Developmental Disabilities in HHS, said the agency estimates that serving everyone now on the list would cost about $149 million, of which $71 million would be state funds. The estimate does not account for future needs.
That would be on top of the $341 million budgeted this year to serve more than 4,700 people with varying combinations of day programs, residential services and respite. That total includes $156 million in state funds.
“That is a factor we face,” Miller said. “We do not have adequate state appropriations to pay for services for everyone who’s eligible.”
She said a priority system, spelled out in state law, determines how quickly people can get off the waiting list. Top priority goes to people on the verge of homelessness or faced with a threat to their life and safety.
Fourth priority goes to 21-year-olds who are finishing school and need day services to maintain skills and pursue economic self-sufficiency. Others get services on a first-come, first-served basis when state lawmakers appropriate more money or funds are freed up by a person dying or moving out of state.
Erin Phillips, who was born with cerebral palsy and intellectual disabilities, received day programming after leaving school, including a job coach who helps her keep the grocery store job.
But she wound up on the waiting list for residential services. During that time, her mother said, she lost some of the habits and skills she had learned at public school, such as getting up and getting ready in the morning or making simple meals. She also got depressed and started lashing out in frustration about living in her parents’ home.
Eventually, the call came that Erin Phillips had reached the top of the list. She first moved into a home with two other developmentally disabled women, but their personalities clashed and the arrangement did not work out.
The next move was to what’s called an extended family home, where she lives with a family that is paid by the state to help her learn and practice life skills. The family also provides room and board.
“She’s much happier being integrated into the community,” her mother said. “We’ve seen tremendous progress.”
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