Advocates for the developmentally disabled react cautiously to announced end of ‘wait list’

LINCOLN — Advocates for the developmentally disabled in Nebraska reacted cautiously to the announced elimination this week of a long-running “wait list” for state services.

Gov. Jim Pillen announced that the state was eliminating the Developmental Disabilities Registry, or wait list, in an attempt to “better support Nebraskans with intellectual and developmental disabilities.” The wait list stood at 2,704 people as of March 1.

‘Huge step forward’

The governor, during a press conference Thursday in Omaha, called it “a breakthrough way to reimagine how services are offered” that will save taxpayer dollars.

“This is the first time in Nebraska history the DD Registry will be eliminated, which is a huge step forward to ensure all Nebraskans have the opportunity and support to live the Good Life,” Pillen said.

But Edison McDonald, executive director of the Arc of Nebraska — a group not invited to the press conference — said he and other advocates are reacting cautiously because not a lot of details have been laid out.

“This could just be some paper shuffling,” McDonald said Friday. “There potentially is something good in here, but it will take some work with stakeholders to figure that out.”

Advocates for the developmentally disabled and the ARC have been rallying in recent weeks for additional funding for services and providers of DD services. They have also called on the state to begin spending existing, unspent funds for such services that may have grown to up to $93 million.

The ‘good enough for you’ life

They maintain that the disabled aren’t sharing in the “Good Life” of Nebraska, but are being offered the “good enough for you” life.

McDonald said everyone wants to see the wait list eliminated, but he questions what kind of services will be offered for the $18 million the state plans to spend to do that. That averages to about $7,000 per client, he said, when the average cost of community care for a person with such disabilities is $30,000 to $50,000.

Past estimates to end the wait list, McDonald added, have been much, much higher than $18 million.

Developmental disabilities include autism, cerebral palsy, Down syndrome and fetal alcohol spectrum disorder.

A wait list for services has existed for years at the state Division of Developmental Disabilities for individuals who want to be enrolled in the Comprehensive DD waiver program, but cannot due to limited funding.

The Nebraska Department of Health and Human Services, which oversees DD services, said that the state’s new approach will “provide a full continuum of care that adapts to individuals’ changing needs as they age.”

A ‘new approach’

That, the department said, will include:

• Medicaid for DD-eligible children who meet the required level of care.
• Additional access to family support and day services waivers that allow families to live together.
• Case management services for individuals who do not require waiver services.
• Employment services.
• Comprehensive DD waivers based on a needs assessment developed by DHHS with the support of stakeholders.

The elimination of the DD Registry, according to DHHS, will include new models of staffing including telehealth, virtual support and the expansion of independent providers. It is expected take 12 to 18 months to roll out the new policies.

But McDonald said that while it’s good news that everyone will become eligible for Medicaid, it is unclear if the state will begin spending its unspent DD funds, and concerns remain that individual budgets for care will be reduced. That could mean that not all kids with high needs will be allowed on a comprehensive waiver program.

‘A mixed bag’

“It’s a mixed bag,” McDonald said.

That wasn’t the outlook at Thursday’s press conference, which was hosted by the Munroe-Meyer Institute at the University of Nebraska Medical Center. The institute, which provides services across the state, has been designated by UNMC as a “center for excellence” in caring for individuals with development disabilities.

Jeffrey Gold, the chancellor of UNMC, said that eliminating the current registry will “enhance the support for individuals and families impacted and will promote self-independence and self-determination.”

“Access to resources improves the health and well-being of the individual receiving care, their families, caregivers, and others in their community,” said Gold, who was recently named as the priority candidate to become the next president of the University of Nebraska system.

Earlier this month, DHHS announced the launch of a new “Home and Community-Based Services” waiver, to provide services to 850 children, ages birth to 21, with intellectual or developmental disabilities.

Each participant would be eligible for up to $10,000 in services.

Advocates said that program was authorized two years ago and is illustrative of the state moving slowly in spending money it has already allocated for DD services.