'They feel abandoned': Advocates for people with disabilities ask the state to do more

People with disabilities, their families and stakeholders in state programs for people with disabilities raised concerns at Friday Legislative hearings that more needs to be done.

Two hearings centered around funding and function of the state’s Olmstead Plan and interRAI assessments and how state Department of Health and Human Services resources succeed, and fall short, in serving the needs of the disability community.

“Nebraska has a responsibility to make sure our state is constantly working to provide home and community-based services to our citizens, to those that currently have disabilities, and to those that may not have them yet, because the national average says one out of four people will become disabled in this country,” advocate Kathy Hoell said.

Discussions around how the state implements the Olmstead Plan range from staff with the Department of Health and Human Services ignoring volunteers asking for their help to warnings that the plan may no longer be enforceable under changing federal guidelines. The Olmstead Plan is named after a landmark U.S. Supreme Court Case that found that people with disabilities have a right to live in their communities and homes. It requires states to provide in-community services around job placements, housing, education and more.

This hearing was a result of LB737, which passed this past legislative session and was sponsored by Sen. Victor Rountree, who represents parts of Sarpy County. It required the Legislature’s Health and Human Services Committee and Urban Affairs Committee to hold a joint hearing to review the Olmstead Plan’s success around housing, employment, education, community support and transportation services sometime on or before Oct. 1 every year. A report of the hearing will be submitted to the Clerk of the Legislature by Dec. 31.

Those who sit on the Nebraska Olmstead Advisory Committee testified on the benefits of the state program, including Lindy Foley, the director of the Nebraska Vocational Program, which helps people with disabilities find and keep jobs. She said her program has successfully been connecting Nebraskans with jobs and engaging businesses to hire people with disabilities, adding that this program is even functioning across Nebraska’s rural areas.

But Foley added that not all parents know that their children with disabilities will be able to work and transition directly into more intensive care when the child comes of age and that their work to keep families updated on job opportunities is ongoing. Tobias Orr, director of the Assistive Technology Partnership, said as far as accessible housing goes, staff are working to bring more contractors in to build and modify homes and have brought on 12 this year. But he added that of the 140 Section 811 housing vouchers the state has received, only 35 have been given out. These vouchers support the creation of accessible homes for very-low-income people with disabilities.

Joni Thomas, who is part of an Olmstead working group, added that the people responsible for advancing important programs at DHHS rarely attend meetings and never respond to her emails with requests for assistance.

Other advocates, including Hoell, said transportation is a particularly big challenge for Nebraskans with disabilities. Hoell said services like Lyft and Uber don’t offer accessible options and transit services are both expensive and unreliable. Accessible transit in Lincoln often must be scheduled at least one week out, Hoell said, and one of her friends was once left waiting for a ride home from work for two hours. Moreover, a ride from Lincoln to Omaha can cost hundreds of dollars, while a trip across the state, Hoell said, could cost thousands.

“What’s important to realize is that disability does not discriminate," Hoell said. “Any person from any income, ethnicity or location can enter this minority group at any time.”

“(The) Community Supports (working group) is not making the progress it should, and it’s not for a lack of trying,” Thomas said. “People with the authority to move this work forward are not at our table.”

Brad Meurrens, the public policy director at Disability Rights Nebraska, said federal policy around Olmstead Plans, which are based on and named for a U.S. Supreme Court decision that affirmed the right of people with disabilities to live in their own communities, is weakening. The Department of Justice issued an opinion in June that challenges historical interpretations of disability rights findings and decisions. Meurrens said if the department does not enforce the Olmstead decision, it is a roundabout way of eliminating those rights altogether.

“Rights have responsibilities,” Meurrens said. “In order to exercise your rights, there is a responsibility for the state or the administration to provide the means, methods, and mechanisms to exercise these rights.”

Meurrens argued that Nebraskans have the state’s Olmstead Plan to fall back on should federal support fail. Meurrens also brought up concerns that people with disabilities could be institutionalized against their will under new federal guidance.

The second hearing, held by the Health and Human Services Committee alone, functioned as an interim study into how the state’s interRAI program, which is a tool used by DHHS as of last year to determine financial support provided to people with disabilities and their families, is helping Nebraskans.

Rountree said out of 5,594 interRAI assessments conducted up through July of this year, 974 individuals had their funding reduced. Rountree estimated this can add up to a $100,000 difference in support. He added that people who can speak are being marked down as nonverbal, care needs have been left off of individual’s tests, and some determinations have been made without a hearing being held at all. While there have been 584 appeals, only four resulted in changes.

“When a piece of paper changes and a family loses hundreds of thousands of dollars of support, they can do nothing but feel abandoned by a system designed to protect them,” Rountree said.

Cathy Martinez, president of the Autism Family Network and mother of a son with autism, said that while the system the state used before implementing interRAI was considered outdated, it was more accurate and yielded only around 100 appeals a year.

“It is a waste of taxpayer money to do annual assessments on a stable population of people with developmental disabilities,” Martinez said. “Kids aren’t getting cured. DHHS doesn’t even have enough trained staff to do the annual assessments.”

She said the assessments can only be scheduled between 10 a.m. and 3 p.m. and can only last 90 minutes, but that this schedule leaves working families in the lurch. Her own son’s assessment took more than two hours just to get through the questions.

On top of that, Martinez said while her son had an assessment nine months ago, he is set to have another one in the coming months and they have yet to get a determination on their appeal from the first one. And even for nonverbal individuals, comments from a guardian or caretaker cannot be included into the weighted score, only comments from the person being assessed are scored.

“Our cries for help to DHHS and the governor have fallen on deaf ears,” Martinez said.

Tony Green, director of the Division of Disability and Aging under the Department of Health and Human Services, defended the interRAI assessment tool, arguing that other states use it and that it was designed to give the state a more holistic overview of an individual’s health and support needs.

“Without unlimited funds, an approach such as this is fiscally responsible, necessary, and complies with Nebraska statute requiring an objective assessment process,” Green said.

InterRAI was introduced along with the ending of the state’s waitlist system, which he said could take years for some and was unsustainable. Green argued that the system has supported increasing the number of clients receiving support and, for some, increasing funding going to families. Green reported that around 25% of families got more money through interRAI and about 54% had their funding stay the same.

Green also said an independent contractor will hold an evaluation of how Nebraska implemented the interRAI system.