Developmental disability waitlist ends, many families still not accepting offers

Gov. Jim Pillen and the state Department of Health and Human Services announced Monday the end of an eight-year waiting list for developmental disability services.

“In just 15 months, we've taken 3,000 families off the developmental disability wait list," Pillen said.

Pillen said the waiting list had been an issue for more than three decades and that finding a solution was a “no-brainer."

Now, families will be able to immediately apply for services, Pillen said.

The best way for people to apply is through iServe, said Tony Green, director of the division of developmental disabilities. From there, it takes one month to hear back from the department if the family has all the necessary paperwork. If the family doesn’t have documentation, it takes longer.

Of the about 3,100 families offered a waiver, 45% have accepted, Green said. That’s about 1,400 families, as of the beginning of June. About 27% of families have declined their waiver, with the rest still pending.

The low acceptance rate is due to families on the waiting list for an extended period no longer needing services and the pending offers, Green said.

But others say people are turning down the new waiver programs because they can’t find a service provider.

Additionally, accepting a waiver offer does not guarantee people with intellectual or developmental disabilities receive the services they need. That’s according to Alana Schriver, executive director of the Nebraska Association of Service Providers.

Staffing shortages and low wages at service programs are to blame, Schriver said. Nebraska providers pay near minimum wage, now $13.50 per hour, while many other states offer 150% of the minimum wage.

During the announcement Monday, DHHS did not have data on the number of families previously on the wait list who have found new programs. The department had not responded to a follow up request as of Monday night.

Funding

Since the initiative to end the long list began in March 2024, DHHS rolled out a new family support waiver and opened access to federal Medicaid dollars for Nebraska families.

The programs were made possible by $18 million in state general funds and a federal Medicaid match.

Health care and programs for people with developmental disabilities are not cheap.

Angela Gleason’s 13-year-old son has a severe form of autism and was recently accepted to the new family support waiver.

She plans to put part of the annual $10,000 she received toward a summer camp in Omaha. The program will cost about $3,200 for 30 hours of activities.

“When we looked at it previously with his service coordinator, she was worried that if we needed full-time day support for the whole summer, we might not have enough funding to make it through the summer," Gleason said.

Gleason added her son loves the summer camp. They were lucky to get three weeks approved because of the high demand.

It took about six months to apply for the family support waiver and find a program, Gleason said. That’s much faster than the eight-year wait previously.

“I think the department has adjusted, and they've added a lot more support,” Gleason said.

However, parts of the process are still difficult to navigate. For example, Gleason said the state and federal government each require documentation proving her son has a disability and to what extent he can be independent.

“It's a lot of paperwork,” Gleason said. “And you get worried that you're missing something.”

When he’s older, her son will likely apply for the adult day waiver, Gleason said. She hopes it will pay for independent living but is uncertain whether DHHS will allow it.

“I don't know that my son wants to live with me when he's 25 or 30,” Gleason said. “If he wants to, that's fine. But at the same time, if he was able to get out and live more independently, I think that would be a huge thing and very important for him.”

She hopes to use the remaining family support waiver dollars for respite care during the school year.