You asked how many states operate Medicaid waivers that serve adults with autism but not mental retardation, what services they cover, how many people they serve, and how much they cost.

SUMMARY

Every state operates at least one Medicaid home- and community-based services (HCBS) waiver that covers people with intellectual and developmental disabilities. Of these, 39 cover adults with autism who do not also have mental retardation (MR). But we do not know how many adults with autism but not MR they serve because the states do not specifically identify this population in their waiver enrollment counts. Two waiver eligibility criteria—diagnosis and function—suggest the number is probably small.

1. People must have MR or meet their states' developmental disability (DD) definition. The latter typically requires an individual (a) be substantially limited in at least three major life activities and need extended or lifelong services or (b) have an impairment in general intellectual functioning or adaptive behavior and require treatment or services similar to those a person with MR needs.

2. States must determine that, without the waiver, a person would likely need a level of care typically provided in a residential setting that provides ongoing evaluation, planning, 24-hour supervision, coordination, and integrated health or rehabilitative services.

The most common waiver services states offer that may be useful to adults with autism but not MR are habilitation (day and residential); respite care; prevocational training and supported employment; family training; personal care, homemaker, and chore services; nonmedical transportation; and occupational therapy.

Over 395,000 people with MR or DD received waiver services in 2003, according to the Kaiser Family Foundation, an average of nearly 7,900 per state. The 39 states whose waivers potentially serve adults with autism but not MR served about 314,900 people. On average, these 39 states spent around $ 36,000 per waiver enrollee; spending per enrollee ranged between $ 15,300 in Mississippi to $ 73,700 in Maine.

MEDICAID HOME- AND COMMUNITY-BASED SERVICE WAIVERS

Federal law permits states to obtain waivers of certain Medicaid rules to enable them to provide home- and community-based services to people with intellectual and developmental disabilities as alternatives to institutional care (MR/DD waivers). MR/DD waivers allow states to design a diverse array of services that address this population's specific needs. But in order to obtain a waiver, a state must demonstrate that providing waiver services to the target population is no more costly than the cost of services these individuals would receive in an institution.

Every state operates at least one waiver. Over 395,000 people received waiver services in 2003, according to the Kaiser Family Foundation, which provides data for each state. (The federal Health and Human Services Department reports MR/DD waivers served nearly 450,000 people in 2005, but it does not provide state-level data. )

Waiver Types

States operate two types of MR/DD waiver programs: traditional “comprehensive” waivers and newer “supports” waivers. States were first given the opportunity to adopt these waivers in 1981 when their main goal was to move people out of large institutions or nursing homes. They adopted “comprehensive” waivers that covered 24-hour care in community living situations like group homes and sometimes 24-hour supports at home. These waivers relied on traditional community provider agencies for service delivery. They are subject to global per participant expenditure caps based on the state's Medicaid cost for institutional care.

In contrast, the newer “supports” waivers are geared specifically toward preventing out-of-home placement. They offer less than 24-hour in-home supports and rarely offer 24-hour care in community residences. These waivers are designed to permit consumers to choose the supports they want; some permit consumers to direct who provides the services, including, in some cases, family members or neighbors. They typically place financial limits on the amount of waiver services an individual can obtain. These limits are roughly 20 to 50% less than the per capita costs that states incur for comprehensive waivers. (For a fuller treatment of waivers see U. S. Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, Gauging the Use of HCBS Support Waivers for People with Intellectual Disabilities, October 2006 http: //aspe. hhs. gov/daltcp/reports/2006/gauging. pdf. )

This report does not distinguish between waiver types in its presentation of waiver eligibility, services, and costs (see attachment 1).

Waiver Eligibility

In order to receive services under an MR/DD waiver a person must meet three eligibility criteria: diagnostic, functional, and financial.

Diagnostic. A person must have mental retardation or other type of developmental disability (DD) to be eligible for waiver services. Mental retardation typically means an IQ of 70 or less, but states define DD differently and consequently serve different populations. And, while a state's DD definition might encompass people who do not have mental retardation, some states' waivers cover only those people with MR.

Most states use the federal DD definition, which says DD is a severe, chronic disability that:

Some states modify this definition to exclude people who have only physical impairments (such as those with traumatic brain injury), require limitations in fewer life activities, or require the disabling condition to manifest by age 18.

Some states' DD definition specifically references people with MR and conditions “closely related” to MR because they result in impairment of general intellectual functioning or adaptive behavior similar to that of people with mental retardation and require treatment or services similar to those people with MR require. Several of these states name specific related conditions, including autism, cerebral palsy, and epilepsy.

Functional Level. Because waiver services enable a person to avoid institutionalization, people must otherwise need an institutional level of care to be eligible for waiver services. States must determine that, without waiver services, the person would likely require the level of care provided in an intermediate care facility for persons with mental retardation (ICF/MR). An ICF/MR is a Medicaid-certified residential setting that provides ongoing evaluation, planning, 24-hour supervision, coordination, and integrated health or rehabilitative services to help people function at their greatest ability.

Financial. A person must meet Medicaid waiver income and asset eligibility requirements.

STATES' HCBS WAIVERS FOR PEOPLE WITH AUTISM BUT NOT MR

All states operate at least one MR/DD waiver. Attachment 1 shows states' (1) DD definitions, (2) whether they cover adults with autism but not MR, (3) the waiver services they provide, (4) the total number of people they serve under the waiver, (5) the total amount they spend on waiver services, and (6) the agency that administers the waiver.

All states' DD definitions would appear to include all people with autism who meet the definitional criteria, but 11 limit waiver eligibility to people with MR, leaving 39 covering adults with autism but not mental retardation.

The most common waiver services states offer that may be useful to adults with autism but not MR and their families are habilitation (day and residential); respite care; prevocational training and supported employment; family training; personal care, homemaker, and chore services; nonmedical transportation; and occupational therapy. Following are definitions of the less common services.

1. Habilitation is delivered in a person's residence (residential habilitation) or in the residence and community (day habilitation). It provides instruction and assistance to enable the person to acquire and maintain skills that will allow him or her to live and socialize independently. Services include observing, guiding, and helping people in meal preparation, household chores, shopping, money management, leisure activities, and socializing. They can include services to help reduce challenging behaviors.

2. Prevocational services are aimed at preparing a person for paid or unpaid employment. They are not directed at a particular job, but rather teach concepts such as attendance, task completion, problem solving, and safety.

3. Supported employment helps an individual find and work in a competitive, paid job like someone without a disability. A job coach or job development specialist helps the person find a job and learn the specific job tasks and then supervises him or her at the work site.

4. Nonmedical transportation takes a person to and from waiver services such as work and habilitation sites and community activities.

5. Respite services provide temporary care by a trained person to relieve family caregivers from their day-to-day responsibilities. Depending on the family's preference and the waiver recipient's needs, it can occur in the family's or respite caregiver's home or a specialized facility.

6. Family training and counseling helps the people who live with or provide care to the waiver beneficiary learn about treatment regimens and ways to keep the person living safely at home.

Most states administer their MR/DD waivers through a DD office in a comprehensive health, human services, or combined health and human services department. A few states (e. g. , New York, South Carolina, Tennessee, Vermont) administer them through DD or combined DD/MR (or DD and aging) departments.

ATTACHMENT 1: State HCBS Waivers Services for Adults with Autism but not Mental Retardation