End is near, Pillen says, for persistent ‘wait list' for Nebraskans with developmental disabilities
Blake Hodgen, a participant at Madonna Ability Alliance, caps the lineup of speakers during an event Monday that closed Developmental Disabilities Awareness Month. Gov. Jim Pillen during a talk after a tour, said a goal he announced last March is nearly accomplished — eliminating the state's wait list for services for individuals with intellectual and developmental disabilities. (Cindy Gonzalez/Nebraska Examiner)
OMAHA — Gov. Jim Pillen said Monday that, by July, his administration expects to have accomplished a goal it announced a year ago: elimination of a long-running 'wait list' for Nebraskans seeking services for intellectual and developmental disabilities.
Last March, the list contained about 2,700 people, and a projected wait for available funds stretched for up to eight years. The governor said the number has been whittled to about 700.
'This is the first time in the last 35 years that this wait list is going to be eliminated,' Steve Corsi, chief executive officer of the Nebraska Department of Health and Human Services, said at a press conference in Omaha that also closed Developmental Disabilities Awareness Month.
Pillen, Corsi and Tony Green, director of the DHHS Division of Developmental Disabilities, updated progress on cutting the wait, the public cost and what they've described as the state's reimagining of how services are offered to Nebraskans with developmental disabilities.
After a tour of the recently opened new headquarters for Madonna Ability Alliance, which helps support Nebraskans with disabilities, state officials answered questions from reporters and mingled with Madonna families and participants filling the lobby of the building near 72nd and Pine Streets in Omaha.
Among the lineup of speakers was Blake Hodgen, a Madonna participant who stole the show by relaying his educational, music therapy and job-training experiences since second grade at Madonna, which he and others said helped prepare him for his long-time catering job with the University of Nebraska Medical Center.
Pillen told the group he took aim at shortening the list, known also as the Developmental Disabilities Registry, because it didn't make sense.
'You break the glass if that's what you have to do,' Pillen said. 'But when the most vulnerable Nebraskans' needs weren't being met for eight years, (it) popped my top off.'
Eliminating the wait list, Pillen said, requires a roughly $40 million annual investment, with the state footing about $19 million each year and federal funds covering the rest. He foresees Nebraska becoming a model for other states with long waits to access developmental disabilities services — though advocates say they see some flaws, and they are still evaluating the full impact of changes.
At one time, Green said, the Nebraska registry listed 4,500 names.
Clearing the wait, he said, means that all the families will have been offered at least some specialized support through a Medicaid waiver program that lets states to tap federal funding for accessing home- and community-based services intended to keep people out of institutions.
Key to the list shrinkage, said Green, is a new approach that 'meets families where they're at' — providing for a more immediate and targeted service, such as funding for child or respite care or vehicle modification. Family advocates have said a family support waiver was created, for instance, as an intermediary solution that provides up to $10,000 a year for such services.
In the old system, Green said a family would put their name on the registry and wait as long as eight years to get what is known as a 'comprehensive' developmental waiver — which is more costly but provides access to a wider array of services, including full-time residential services outside the home, particularly for adults.
Green said not all families require such a gamut, and state officials believe that the overall needs of the population are better met by providing more narrow services closer to when a family needs them.
Also new and crucial, he and advocates said, is that the state now allows youths with disabilities access to medical care through Medicaid — even if their household income is beyond typical Medicaid limits.
Said Green: 'What we're working on now is a system that says, 'What's your need that's being unmet?' And we'll figure out which waiver has the right service and supports for you. I would say it's a continuum of care … It will be individualized to the family and child.'
Edison McDonald is executive director of The Arc of Nebraska, the state's largest membership organization for people with intellectual and developmental disabilities and their families. He said the state's new approach takes positive steps, including the Medicaid expansion that helps ensure that kids with developmental disabilities get access to health care.
However, he cited drawbacks. For example, he said, the often lengthy wait used to be a pathway to guaranteed access to comprehensive services including the out-of-home residential services. That is no longer the case, McDonald said.
'They call it innovation when really it is barring a lot of people from that access to residential services. In some cases, it misses the mark and can potentially be harmful,' he said.
McDonald said the comprehensive service option is still available, but for adults with the highest needs such as being homeless or being a danger to themself. He said advocates are still trying to grasp the breadth of the impact the changes will bring.
In some cases, it misses the mark and can be potentially harmful.
– Edison McDonald, The Arc of Nebraska
McDonald said what advocates thought was an 'intermediary' solution — the family support waiver offering up to $10,000 of services annually — appears possibly to be more of a 'destination.' He also said the state's system includes what advocates view as an outdated rate schedule for service providers.
Alana Schriver, executive director of Nebraska Association of Service Providers, applauded the Pillen administration's commitment overall. But she worries about the state rates allowed for service providers. Without better wages for more workers, she said, 'this whole conversation is moot.'
'If there is nobody to serve the people, what are we doing?'
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