SD lawmakers form a working group to address concerns that the disability program may violate federal law

SIOUX FALLS, SD — A group of lawmakers will look deeper into ways to improve Family Support 360, a program that supports hundreds of people with disabilities in South Dakota. In addition to the strict rules, which participants say add burden to an already difficult situation, some lawmakers fear the program’s administration could violate federal disability regulations.

At the November 11 meeting of the Interim Appropriations Committee, Senator Jack Kolbeck proposed forming a working group to bring together affected families, service providers and the Department of Human Services to begin addressing concerns. Though no date has yet to be set for the working group, lawmakers say it will meet before the next budget allocations meeting on December 14.

“Families don’t ask for much. We don’t expect everything. And we know there have to be parameters with every program,” Brenda Smith, a longtime advocate for disabled people in the state whose adult son is part of the Family Support 360 program, told the committee. “But we need parameters that are developed with the community service providers who provide some of these services and with families and people with disabilities who have this lived experience.”

In short, Family Support 360 is a program that aims to keep disabled children and adults out of institutional settings and either stay at home with their families or in an independent situation. However, the state does not leave these individuals completely alone; They subsidize accompanying caregivers and cover certain eligible materials for caregiving.

The Department of Human Services estimates the expected spending per person in the Family Support 360 program in fiscal year 2023 is approximately $7,000.

According to these documents, the estimated annual cost per person in institutional settings can be as high as $315,000.

As with all other Medicaid-based disability programs, these costs are shared by state and federal funds; In 2023, South Dakota will absorb about 43 cents of every dollar spent on Medicaid disability services.

Considering that around 1,400 people are in the Family Support 360 program, the state saves at least $10 million a year by providing flexibility for disabled people and their families.

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Senator Jack Kolbeck, a member of this summer’s Interim Appropriations Committee, led the needed improvements to the Family Support 360 program.

Post / South Dakota Legislature

Even more important than these savings for legislators and program participants, however, is the way family-centered care can be flexible and, in many cases, better meet the needs of disabled family members than in an institutional setting.

“These families want to help their disabled children, regardless of their disability, become a part of our citizenship in the state of South Dakota and hopefully someday be a part of the workforce,” Kolbeck said on the Government Operations and Audit Committee. who spent much of their Oct. 18-19 meeting hearing testimonies about the difficulties with the program.

Program execution fails for some families

While the program has often been a win-win during its decades of implementation, families say they haven’t received enough support from the state recently.

Aside from a general lack of communication and outreach, key policy issues identified by participants in the program include a 20-hour cap on escort care, a decentralized system for finding service providers, and a difficult process to to cover the necessary articles for the care.

Under the program, families directly hire and mentor caregivers. However, these caregivers are under the umbrella of eight not-for-profit service providers, private companies that handle Medicaid paperwork and applications, among other administrative tasks, and essentially act as collaborators with the families.

These providers would have to fund employee benefits for attendant caregivers who work more than 20 hours per week; Providers say this would not be financially viable without a change in government funding.

After program participants heard of the difficulties this cap poses for family members filling in gaps in service, lawmakers say the state should consider increasing funding for these providers to increase full-time work for families that you may need to support.

Hourly limits and hiring quotas — which some families say have led to “hiring freezes” — are controlled through annual contacts that providers say have little opportunity to negotiate with the state before implementation.

“I really wonder if these contracts could not be entered into in such a way that full reimbursement of total compensation claims could be added to these contracts,” Sen. Wayne Steinhauer said at the Oct. 19 Government Operations and Audit Committee meeting. Unless you negotiate before the contract goes into effect, don’t do it. So that has to happen and we have to find a way to reimburse these agencies for all their costs and that will open the 20 hour limit.”

Another relatively recent change to the program isn’t a policy change, but a stricter interpretation of what items can be refunded. Although there is an appeals process to receive benefits related to state care, it can be “controversial”.

Providers who used to generously anticipate funds for investments in disabled family members with the expectation of reimbursement have also become more cautious.

Ann Van Stedum, whose daughter participates in the Family Support 360 scheme, told the government’s Operations and Audit Committee that an application for a weighted blanket had been denied because it was “a toy”.

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Rep. Linda Duba, D-Sioux Falls, a member of both the Government Operations and Audit Committee and the Interim Appropriations Committee, will serve on the working group and make recommendations for the program.

Adam Thury / Mitchell Republic

“It’s not a toy. Weighted ceilings are critical,” Linda Duba, a grants committee member, told Forum News Service. “It’s very common. We use them at school for kids who are having trouble getting them to regulate themselves. You are very helpful.”

The last major problem is a decentralized application and waiting list that forces individual families to apply to individual service providers, often ending up on multiple waiting lists at the same time. Public testimonies have shown that in some cases this waiting list can be as long as two years.

“The state needs to step in and create some sort of front door through which families can ask for help, and then the state would be an intermediary between those families and the providers,” said Senator Reynold Nesiba, a member of the Appropriations Committee.

The Department of Human Services says it is working on a centralized application and waiting list process that should be ready next year.

Legislators are asking the Department of Human Services to strengthen compliance with federal regulations

There was a particular back-and-forth during the Oct. 19 Government Operations and Audit Committee meeting that worried some lawmakers.

“Are we violating any federal or state law or rule with the existence of the waiting list as it is now?” Senator Reynold Nesiba asked Jaze Sollars, who is serving as the service coordinator for the family support program.

“We’re not currently (in injury),” she said. “However, the moment (the waiting list) becomes a government-run list, if we were up to date, we would be.”

Reynold Nesiba
Sen. Reynold Nesiba, D-Sioux Falls, is a member of the two committees that recently heard public comment about Family Support 360’s shortcomings.

Hunter Dunteman

The complexity of the answer essentially depends on the decentralized waiting list; Technically, the department is not “aware” of the long wait times for families applying to the program, as these lists are maintained by individual providers. Nesiba could hardly believe this answer.

“Aren’t we aware now? I think this meeting is a public hearing, I think we all know the list,” Nesiba said.

Concerns that the program’s waitlist and hour limit violate federal regulations stem from a 2014 letter from the Justice Departments and the Department of Health and Human Services, which recalled that “no qualified person with a disability as a result of such a disability from which Participation in, or denial of benefits of, the services, programs, or activities of any public entity.”

The wording is taken directly from the Americans with Disabilities Act.

The letter goes on to say: “Introducing caps across the board risks violating the ADA if the caps do not address the needs of persons with disabilities and consequently exposes them to serious risk of institutionalization or segregation.” .”

This could be read as requiring a waiver of the weekly hourly limit for companion care where waiver of that care would require a disabled person to enter a more restrictive environment.

With regard to the waiting list, the state administrative regulations also stipulate that in the case of department-managed waiting lists, the department places higher-priority people on the waiting list.

A series of recommendations from the Government Operations and Audit Committee directed the state Department of Human Services to make “reasonable changes” to ensure disabled people are cared for in the “least restrictive environment”, which often means at home.

Although the department continued to claim that it “has no reason to believe” there is a compliance issue at the Nov. 11 budget appropriations meeting, the potential reality of disabled people going without services in the state should be a key issue going forward his working group.

“The state must take steps to ensure that we comply with federal laws, that we meet the needs of South Dakota’s families, and that we work collaboratively with our providers,” Nesiba told Forum News Service.

Jason harward is a

Report for America

Corps reporter who writes about state politics in South Dakota. Contact him at

605-301-0496

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[email protected]

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