MEDICAID AUTISM WAIVERS AND STATE AGENCIES SERVING PEOPLE WITH AUTISM

April 10, 2007
2007-R-0319




By: Saul Spigel, Chief Analyst


You asked (1) for a list of states with Medicaid waivers that cover services specifically for people with autism and (2) what agencies other states use to oversee service delivery to this population.

SUMMARY

Four states—Colorado, Indiana, Maryland, and Wisconsin—are operating Medicaid waivers covering home- and community-based services specifically for people with autism. All are limited to children. Massachusetts applied for a waiver in late 2006 and is waiting for approval.

Forty-four (44) states and the District of Columbia have received waivers to provide home- and community-based services to people with developmental disabilities (DD). Depending on each state's DD definition, these waivers may cover services to people with autism. This report focuses on the four states with autism-specific waivers. A future report will look at the states with DD waivers.

We found three states—Massachusetts, Pennsylvania, and South Carolina—that have a state government unit dedicated solely to overseeing or providing services to people with autism. Most other states include autism in their definition of DD and give the agency or unit that has programmatic responsibility for this population responsibility for services to those with autism, as well. Connecticut, though, is one of five states whose DD definition appears to exclude autism unless the individual's intellectual functioning means that he or she also has mental retardation (Alabama, Massachusetts, Mississippi, and Virginia are the others, but Massachusetts' recent reorganization of its Mental Retardation Department may indicate this has changed).

A subsequent OLR report will examine how states define DD and to which agency they give principal responsibility for delivering or overseeing services to people, particularly adults, with autism.

MEDICAID WAIVERS

Medicaid Waivers Generally

States have received Medicaid home- and community-based waivers for (1) people with developmental disabilities, generally, which can include people with autism, and (2) specifically for people with autism. Forty-four (44) states and the District of Columbia have received developmental disability waivers while four have received autism-specific waivers: Colorado, Indiana, Maryland, and Wisconsin. Some states operate both types of waivers but permit people to receive services only under one waiver at a time.

The waivers allow individuals who would otherwise need long-term institutional care to receive service in their communities. Each state determines the services it covers under the waiver. According to a recent Government Accountability Office (GAO) report on federal autism activities, states' autism waiver programs generally offer the same services as their developmental disability waivers; the primary difference is that the autism waiver may offer early intervention behavioral therapies targeted to young children (http: //www. gao. gov/new. items/d06700. pdf).

Although people with autism can potentially receive services under these waivers, many do not because they do not meet eligibility rules or because the states limit enrollment. A person is eligible for waiver services only if, without the waiver's availability, he or she would need long-term institutional care. Consequently, people at the higher functioning end of the autism spectrum, such as those with Asperger's syndrome, are typically not eligible for waiver services.

States can cap waiver enrollment, and some that do have long waiting lists. Because some autism interventions have been found to be effective only when started at an early age, children who remain on the waiting list for several years may no longer be eligible for services when an a slot opens. One (unnamed) state told GAO that its waiting list is five years long, and its autism waiver covers only one specific kind of intensive intervention, which must begin before age six. Since children are not usually diagnosed with autism until age three, this combination means that no child with autism has ever received waiver services in that state.

Autism-Specific Medicaid Waivers

Colorado, Indiana, Maryland, and Wisconsin have waivers specifically addressing autism. They all limit waiver services to children. The first three states' waivers are only for children with autism. Wisconsin provides intensive in-home autism treatment under two broader waivers, one for children with DD and the other for children with social and emotional disorders. In Indiana and Wisconsin, children eligible for autism-specific services are also eligible for services under other Medicaid waivers. Table 1 displays information about when the waiver began, the agency that administers the waiver, the ages the waiver covers, eligibility criteria, covered services, enrollment or cost caps, and other information.

Table 1: Autism-Specific Medicaid Waivers


Colorado
Indiana
Maryland
Wisconsin

Date of Waiver
2006
2002
2001
2004 (but state previously covered some autism-related services under Medicaid fee-for-service)

Administering Agency
Health Care Policy & Financing Agency
Bureau of Developmental Disabilities
Department of Education
Bureau of Long-Term Services in Health & Family Services Dept.

Age Range
0-6
0-22
0-21
0-22, must begin receiving services or be on waiting list by age 8

Eligibility
Autism, but not Asperger's or PDD/NOS*
Autism, but not Asperger's or PDD/NOS*
Autism, including Asperger's and PDD/NOS*; must receive early intervention services or at least 12 hours/week of special education services
Autism, including Asperger's and PDD/NOS*

Financial Eligibility
Medicaid-eligible; parents' income included
Medicaid-eligible; parents' income excluded for children under 18
Medicaid-eligible; parents' income excluded
• Medicaid-eligible; parents' income excluded

• Parents with incomes over 330% of federal poverty level pay sliding scale fee

Services Provided
Behavior, occupational, & speech therapy; psychological services
• Autism-specific services: Applied behavior analysis, community transition support, person-centered & individualized support planning

• Also eligible for broader range of services under DD waiver
Intensive, in-home individual support; respite care; family training; residential habilitation; supported employment; therapeutic integration (after-school); targeted case management
• Autism specific: Intensive, in-home autism treatment (20-35 hours/wk) for 3 years

• Also eligible for broader range of services under DD & mental health waivers

Enrollment & Cost Caps
75; $ 25,000 a year
400
None, but enrollment currently closed
None, but enrollment currently closed; Waiting list =250 (typical wait is 12-14 months )

Number Served (year)
75 (2007)
334 (2007)
900 (2005)
250 (2007)


*Pervasive developmental disability/not otherwise specified

Massachusetts applied for an autism-specific waiver in late 2006 and is waiting to hear about approval. If approved, the waiver will cover about 80 children up to age eight who will receive intensive, in-home behavioral supports. Maine has a waiver for adults with mental retardation or autism, but the services it provides—personal support; day habilitation, including behavior management and skills development; supported employment; communication assessment, and crisis intervention— are not specific to people with autism.

STATE OVERSIGHT OF AUTISM SERVICES

We found only three states—Massachusetts, Pennsylvania, and South Carolina—that have a distinct unit that is responsible solely for overseeing or providing services to people with autism. Massachusetts has an Autism Division in its Mental Retardation Department (which is part of the Executive Office of Health and Human Services). Pennsylvania's new (February 2007) Bureau of Autism Services is part of the Department of Public Welfare. And South Carolina's Autism Division is in its Department of Disabilities and Special Needs.

Most other states include autism in their definition of DD and give the agency or unit responsible for services to this population responsibility for people with autism. Connecticut is one of five states whose DD definition appears to exclude autism unless an individual's intellectual functioning means that he or she also has mental retardation (Alabama, Massachusetts, Mississippi, and Virginia are the others). Pennsylvania had been in this category, but its recent reorganization of its Department of Public Welfare to separate mental retardation and autism services suggests this in no longer the case. Massachusetts also recently took this organizational path, which may indicate it, too, has begun to include autism under its DD umbrella.

SS: ro