June 19, 2018
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Biding time: Can Maine shorten its waitlists for disabled residents seeking support services?

Eric Zelz | BDN
Eric Zelz | BDN
By Matthew Stone, BDN Staff

While acrimonious debate about Medicaid expansion, tax policy and labor laws marked the winter’s legislative session, lawmakers this week united around a $30 million bill to bring the state budget into balance.

Legislators celebrated one provision specifically that promises $5 million to serve hundreds of adults with intellectual disabilities and autism on state waitlists for support services.

The budget bill — if it survives a threatened veto from Gov. Paul LePage — starts funding those services in June 2015 and pledges to continue the funding in the next two-year state budget cycle that starts the following month. The budget sets aside enough funding to serve all 427 people on one waitlist for support services — plus about 50 more if additional people need services — and serve 25 of 932 people awaiting openings for more intensive support.

“By moving forward with eliminating that waitlist for Section 29, we’re getting ahead of the curve,” said Jim Martin, director of the Office of Aging and Disability Services at the Maine Department of Health and Human Services, “and we can better inform the Legislature of what it will take to service people coming into that program.”

While the $5 million funding infusion — which the federal government would likely match with more than $8 million in Medicaid funds — addresses immediate needs, adding more funding isn’t the only change that could allow Maine to serve more adults with intellectual disabilities and autism.

Once adults receive services, Maine spends 81 percent more per person than the national average, according to 2008 data compiled by AARP. Among 11 states that no longer have state-run institutions that traditionally housed adults with intellectual disabilities, Maine’s per-person spending, at $77,736 annually, is the highest. Among all states — which have varying standards for eligibility for services — Maine ranks third.

“The reality for the state of Maine and the reality for every state is, we have a limited number of resources to distribute among thousands of people who need services,” Martin said. “We need to find an equitable way to distribute the resources we have. If someone is over-utilizing services, that equates to someone not receiving services.”

Support to live at home, work

The adults who find themselves on state waitlists are awaiting services that would allow them to live more independent lives in their communities. The services provided fall into two categories of home- and community-based supports, known as Section 21 and 29.

Section 21 offers the highest level of support to adults with intellectual disabilities requiring housing in group homes or other settings, help with personal care, near-constant attention to keep them safe, and assistance in order to work in their communities. The average, annual, per-person cost is about $100,000, according to DHHS.

Section 29 services offer adults less intensive, less frequent support in order to work and participate in other programming offered in their communities. The program — with an average, per-person cost that is closer to $20,000 annually — is soon set to expand to include certain services provided in the home. Nearly 60 percent of those awaiting Section 21 services receive Section 29 support.

“They are able to access their communities more; they are able to be independent; they aren’t isolated and segregated from society,” said Lilia Teninty, senior policy specialist with the Human Services Research Institute in Tualatin, Ore., who specializes in systems for serving people with intellectual disabilities. “It’s just been a steady push to integrate people with all disabilities.”

The 2,945 people with intellectual disabilities in Maine receiving the two categories of services — as well as those on waitlists — receive medical care paid for by the state’s Medicaid program.

The waitlists played a prominent role in the Legislature’s Medicaid expansion debate this session. During his State of the State address in February, LePage called on lawmakers to fund services for those on the waitlists before approving a largely federally funded expansion of Medicaid coverage to low-income parents and adults without children under the Affordable Care Act.

In the end, lawmakers funded support for more adults but couldn’t overcome LePage’s veto of a Medicaid expansion bill.

“There’s been an effort to link it to Medicaid expansion that hasn’t been there at all — any sort of correlation between getting people off the waitlist and expanding Medicaid,” said Staci Converse, managing attorney for the Protection and Advocacy for Individuals with Developmental Disabilities program at the Disability Rights Center in Augusta. “Nevertheless, it’s quite a surprise that that funding was allocated and very good for our clients.”

Limited funding, reform

The first of Maine’s two waitlists for home- and community-based services dates back to 2008, when state revenues needed to pay for the services dropped amid the nation’s economic downturn.

Waitlists for services in many other states have grown over that same period as budgets have tightened, said Teninty. Federal rules allow states to maintain waitlists for a handful of Medicaid services, including home- and community-based supports for adults with intellectual disabilities.

With waitlists growing but no corresponding funding increase, the push has accelerated in states to provide support more efficiently. In the decades since large, state-run institutions closed — Maine’s last institution, Pineland Hospital in New Gloucester, shut down in 1996 — states largely haven’t transformed the systems used to serve people in their communities, Teninty said.

“You embed a lot of services and supports into the system and wrap them around the system and really do good things,” she said. “What has happened over time is, we have continued to hold that service model for new people in the system, and we haven’t moved away from it.”

That means that someone who might be able to live at home with his or her family and receive regular visits from a direct care worker is instead living in a group home staffed at all times.

“Some folks are receiving too many services, and some people aren’t receiving enough,” said Martin.

Teninty, whose organization has performed work for Maine DHHS, last year charted the amount Maine spends to serve people with intellectual disabilities against level of need. She found little correlation.

“In the context of sustainability of systems, developing and funding services at the point where you’re providing a lot of good stuff to people when maybe not all of it is needed when you’ve got other people on waiting lists becomes a great challenge to legislators and decision makers,” she said.

Supports intensity

That’s the challenge behind Maine DHHS’ transition to a new model for supporting people with intellectual disabilities and autism. The department is less than a year away from fully launching the changes, Martin said.

One of the key components is an assessment, called the Supports Intensity Scale, that’s supposed to more precisely determine the level of service needed by someone seeking home- and community-based supports. Traditionally in Maine and elsewhere, once someone was determined eligible for the services, there was no assessment to determine the exact level of service needed, and clients and their families would choose which program to enter. In many cases, the person would end up on a waitlist.

“The expectation has been that they sit tight and wait with nothing for a considerable amount of time, and then once they get through the door, boom, everything becomes available to them,” Teninty said. “The reality is that that is not sustainable.”

Maine DHHS has assessed the level of need for more than two-thirds of those receiving services. After it finishes assessing the remaining adults receiving support services, the department will assess those on the state waitlists.

Meanwhile, department staffers are in the midst of setting rates for services and designing service packages families will choose from that fall under designated budget caps.

Martin said it’s too early to know how the program changes might translate to specific service changes for many of those already receiving support.

“This is a major initiative, undertaking to go through,” he said. “We’re assessing thousands of people. We’re establishing a service allocation model. We’re starting from the ground up.”

And that’s a challenging endeavor that involves changing people’s expectations, said Teninty. “We’re shifting now into the reality of, we can’t continue to provide that same level of support to everybody who needs services.”

Converse said her team, which includes state-designated advocates for adults with disabilities, is generally supportive of the move toward the Supports Intensity Scale. But it’s too early to judge its potential impacts, she said.

“With any assessment process, it’s hard to tell how it’s going to impact people directly before it’s been implemented,” she said. “You can develop the best assessment process, and then it can fail because it hasn’t been implemented well.”

Matthew Stone is BDN opinion page editor.


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