You asked how relevant state agencies view expanding Medicaid home-and community-based waivers to include adults with autism and what legislative committees have cognizance over this issue.

SUMMARY

The Department of Mental Retardation (DMR) is the lead agency for coordinating state services for people with autism. Its Medicaid home-and community-based waiver already covers adults with autism who also have mental retardation. But the department believes that expanding this waiver while it still has a large waiting list of people with retardation who need services would dilute the services available to everyone. Instead, it supports the Department of Social Services (DSS) requesting a waiver specifically for this population, if adequate funds are made available to pay for services.

In 2002, a legislatively mandated advisory commission recommended the development and implementation of a statewide coordinated interagency system of services and supports for people with developmental disabilities who do not have retardation (a population that includes people with autism) and their families. It estimated such a system would annually cost between $ 80 and $ 120 million.

DMR and the Department of Social Services (DSS) responded to those recommendations by urging instead that the state identify “short-term strategies focused on doing more with the resources on hand while improving upon the existing state and local infrastructure. ” They recommended establishing an interagency workgroup to develop a plan for a demonstration project where existing services would be coordinated within and across state and local agencies. Such a workgroup met between December 2002 and May 2003 when it was disbanded because several members opted for early retirement.

The Public Health Committee has cognizance over DMR, and any bill to extend DMR’s Medicaid waiver would start there and undoubtedly need to go to the Human Services and Appropriations committees. A bill to have DSS ask for a Medicaid waiver specifically for adults with autism would probably be referred first to the Human Services Committee.

EXPANDING DMR SERVICES TO ADULTS WITH AUTISM

Current Services

DMR is the lead agency for coordinating state services for people with autism. All DMR services (e. g. , employment and day services, residential options, respite care and other parental supports) are available to adults with autism who also have mental retardation (that is an IQ of 70 or less). These adults are covered by DMR’s existing Medicaid waiver for home- and community-based services, which permits DMR clients who would otherwise need to be placed in institutional settings to remain in their homes. But DMR services and waiver coverage are not available to adults with autism whose IQs measure above 70.

Several other state agencies, notably DSS, provide limited services to adults with autism who do not have retardation. We have enclosed several OLR reports that address Connecticut and other states’ services for this population (2004-R-0534, 2001-R-0720, and 2000-R-0591).

2002 Proposal

In 2000, the legislature created a commission to examine the issue of services to people with developmental disabilities who do not have retardation (which includes those with autism spectrum disorder). The commission issued a series of recommendations in 2002 calling for the development and implementation of a statewide coordinated interagency system of services and supports for this population and their families. It stated that the current array of services was too complicated, fragmented, and confusing to consumers and agency staff and led to uneven access and frustration. It recommended that the system contain 11 key components:

The commission did not explicitly recommend opening DMR’s waiver to people with developmental disabilities who do not have retardation. But it based its cost projections on a waiver model and “strongly recommended” that the system be “designed consistent with federal Medicaid waiver options to reduce the net state funding requirements over time. ”

The commission estimated the cost of serving adults ranged between $ 79 and $ 128 million. It recognized that DMR was already struggling to serve its existing population (1,500 people were on its waiting list for

services at the time) and stated that unless additional resources were provided, it would “not serve these individuals or those persons with other types of developmental disabilities if the same resource base is expected to serve even more people” (a summary of the commission’s report is at executive summary).

Agency Response to 2002 Recommendations

DMR and DSS responded jointly to the commission’s recommendations. They acknowledged that individuals with developmental disabilities sometimes do not meet eligibility requirements for existing services and supports and that even those who are eligible find the “bureaucratic maze near impossible to navigate. ” And, they stressed that budget constraints and economic trends posed significant and real barriers to funding the infrastructure and supports the commission recommended.

The agencies focused on the lack of service coordination. They argued that the need was to identify “short-term strategies focused on doing more with the resources on hand while improving upon the existing state and local infrastructure. ” They proposed developing, implementing, and evaluating a model demonstration project in one location where existing, state-funded and state-provided services were purposefully coordinated within and across agencies and state and local levels. The pilot would concentrate on people who meet the federal definition of developmental disability and who are or may be eligible for current state-funded services and supports.

The agencies proposed creating an interagency developmental disabilities workgroup (IDDW) to develop an infrastructure within the limits of participating agencies’ mandates and practices. They expected the IDDW to develop a detailed management plan for the pilot project, including outcomes, tasks, timelines, responsibilities, and evaluation. The plan would also detail where and how the IDDW would link with other statewide grants and initiatives.

The IDDW began meeting in late 2002. Its last meeting was in May 2003. (It was disbanded when several members retired from state service). Although it did not complete its work, DMR Deputy Commissioner Katherine Dupree reports that the concept of coordinating services has been embedded in the implementation of a “Real Choice” grant DSS received from the federal Centers for Medicare and Medicaid Services. This grant’s purpose is to build capacity in the state to support informed decision-making, independent living, and a meaningful quality of life for people with disabilities.

Among other grant activities, DSS awarded $ 75,000 to help three towns (Bridgeport, …. ) build capacity to serve this population. Their capacity-building activities included (1) developing a task force in each community that includes consumers, families, the public, business, and the private, nonprofit sector; (2) assessing areas of need in each community and developing an action plan. (3) facilitating expansion of the paraprofessional workforce; (4) increasing the availability of affordable, accessible, and safe housing; (5) building collaborative partnerships to assist with implementation; (6) developing peer support networks; and (7) providing targeted training to disseminate information and resources to community leaders and other community members.

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