The state’s consultant, the Stephen Group, conducted a survey of the 2,600 Arkansas families stuck on a wait list for a waiver program that provides Medicaid services offering home and community-based care for developmentally disabled children. The Stephen Group presented their findings in testimony before the Health Reform Legislative Task Force today, and suggested that one way to give the families some relief would be to provide certain benefits which are less costly while the state tries to come up with politically feasible ways to eliminate the wait list and provide full benefits to everyone who is eligible. 

Funding to reduce or eliminate that wait list and provide services that families desperately need is available via the Affordable Care Act’s Community First Choice Option, but Arkansas legislators have prioritized symbolic opposition to Obamacare and refused to seek that federal funding stream. 

Given that political roadblock, the Stephen Group recommended looking at an approach that some other states have used, offering services to families on the wait list but capping the amount of funding available. That doesn’t necessarily move the families off the list, but it could offer them important services. 

The survey was focused on what services were the biggest priorities for the families on the wait list. Around 400 responded to the survey, which the Stephen Group testified represented a statistically significant sample. 

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By far the most expensive benefit, as well as the top priority for the families on the wait list, is supportive living, allowing beneficiaries live in their own home with their family, or an alternative residency. That accounts for a whopping 96 percent of current and historical waiver spending. 

The average beneficiary costs $50,000 per year — that’s if they’re removed from the wait list and get full services. Around 20 percent cost less than $20,000; 80 percent cost less than $70,000. 

The key point from the Stephen Group: Services other than supportive living rarely cost more than $6,000 per year. And some of those services are very important to the families on the wait list. 

From the Stephen Group, here’s the full list of services available as part of the DD waiver program: 

Supportive Living – enable beneficiaries to live in their own homes, with their family, or in an alternative residence
Respite Services – short-term benefits for beneficiaries unable to care for themselves due to absence of non-paid caregivers
Supportive Employment – enable beneficiaries who need intensive ongoing support to perform in a competitive work setting
Adaptive Equipment – equipment to increase, maintain or improve functional capabilities to perform daily life tasks
Vehicle Modifications – adaptations to an automobile or van to accommodate the special needs of the beneficiary
Environmental Modifications – modifications made to or at the beneficiary’s home
Specialized Medical Supplies – items necessary for life support not otherwise available under Medicaid
Supplemental Support Service – enable community living, in response to crisis, emergency or life threatening situations
Case Management Services – assistance in gaining access to needed services, in or out of the Waiver
Consultation Services – clinical and therapeutic services
Crisis Intervention Services – in the beneficiary’s home or other local community site by a mobile intervention team
Community Transition Services – set-up expenses for beneficiaries who are transitioning from an institution

Families were asked to rank the importance of the services. Here are the results: 

While supportive living is the highest priority, there is clearly an interest and need for respite and case management as well, as well as other key services. And many of these are massively less expensive. The Stephen Group argued that even if services were capped as low as $6,000 per person, families on the wait list could have most of the services covered that they need, other than supportive living. 

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If services were capped at $12,000 per year, the Stephen Group estimated that 72 percent of their top five needs, other than supportive living, could be met. If the benefit cap was $15,000, 86 percent of the top five needs, other than supportive living, could be met.  

This would be a band-aid. The state would still need to work to reduce the waiting list (any family that received capped benefits under the Stephen Group’s proposal would remain on the waiting list for full benefits in the future). But comments from survey respondents suggested that they would rather have some benefits immediately, even if it was less than the full waiver program benefits. “The wait list is a very unhappy group, looking to the legislature for relief,” said John Stephen, managing partner of the Stephen Group.  

This approach would require approval from the feds; officials from the Department of Human Services testified that the feds would likely be on board. The process of requesting a new waiver would take six months to a year. 

Support for special health care reporting made possible by the Arkansas Public Policy Panel.