Services and Supports

All states have been expanding services to people with ID/DD through community services programs, mostly funded through the Home and Community-Based Services (HCBS) Waiver program. This Medicaid program offers flexibility for the individualization of services. It is the most significant funding source available to states to provide community services to people who otherwise would be living in a Medicaid-funded long-term care facility.

Today, virtually all people with ID/DD can receive the support they need to maximize independence, be productive, and lead the lives they choose in the community if their community’s services are sufficiently funded and developed. To achieve successful community living, systems must focus on ensuring that each individual is integrated into the community to the maximum extent possible and has access to the supports and services needed to achieve personal goals.

Some of the services and supports required for a person with ID/DD will differ in the community setting from those required in the institution. These services and supports may include assistance with housing, transportation, financial management, and employment. Services and supports for people with ID/DD will also differ based on the level or severity of the disability. In the community, services and supports are made available based on an individual determination of need. This is a more targeted approach to service and support provision than the institutional approach.

Types of Community-Based Services and Supports

In the community, services and supports are provided by a variety of public, nonprofit, and for-profit service providers and are provided in various settings. The types of services and supports include the following:

• At Home Supports: These supports range from one-to-one assistance from a support worker with identified aspects of daily living (such as budgeting, shopping, or paying bills) to full 24-hour support (including assistance with household tasks such as cooking or cleaning, and personal care such as showering, dressing, and the administration of medication). The need for full 24-hour support is usually associated with difficulties recognizing safety issues (such as responding to a fire or using a telephone) or people with potentially dangerous medical conditions (such as asthma or diabetes) who are unable to manage their conditions without assistance.
• Day Services: Nonprofit and for-profit private agencies provide an array of day services such as teaching life skills, social and recreational activities, community outings, communication and mobility training, physical and occupational therapies, sheltered workshops, and vocational services leading to integrated employment or volunteer opportunities in the community.
• Other Services and Supports: In addition to the services designed specifically for people with ID/DD, community residents use mainstream services for medical, dental, and other professional care. Their medical services are provided by doctors, nurses, personal care assistants, provider agency staff persons and trained family members. At times, specialized medical services must be created or packaged in order to meet specific needs: Medical equipment might be brought into a home, or round-the-clock nursing assistance might be provided to enable the person to live as normally as possible.

Because these services need to be individualized and can be available through many different providers, many states have developed “single points of entry” and case management or service coordination programs to help people navigate the system of care.

Individual Service and Supports

A core element of community living is ensuring that all people have the services and supports they need to live the fullest and most personally satisfying life possible in the community. Individualized planning is an absolute necessity, and planning prior to leaving the institution is mandatory. It is important that this process be as comprehensive and inclusive as possible, involving the individual, existing and potential care givers, professional care team members, and others.

It is also critical to initiate and maintain ongoing assessments of both the individual’s needs for services and supports and their availability within the community. The process is needed both for people living in the community and those entering the community from institutional settings.

Person-Centered Planning (PCP)

PCP is one approach to individualized planning. It is a process by which the person with the disability and people important to that person develop a vision of the person’s life going forward and identify the types of services and supports required to achieve that vision. PCP should be discussed with the team that will be working with the person in the community while the person is still in the institution and used to develop a transition plan, spelling out how the person will move, who will be responsible at the time of transition for continuity of support, and how problems will be solved (Thompson et al., 2009).

Research has found that PCP yields better outcomes for adults with intellectual disabilities than do traditional methods of service planning. It is a time-consuming process, and states have implemented PCP in varying ways. However, states are increasingly adhering to the following PCP process:

Individual Budgeting

At the center of a system promoting self-direction is a personal budget allocation the individual may apply, within the bounds of an approved service plan, to buy needed supports (Agosta et al., 2009). The state determines the budget amount for each individual by assessing the individual’s support needs, coupled with reasonable reimbursement rates for providers.

Some states have experimented with consumer-directed funding (also known as cash and counseling), whereby the consumer or a family member has more control over the expenditures. The Cash and Counseling original multiyear demonstration projects were sponsored in 15 states by The Robert Wood Johnson Foundation and the United States Department of Health and Human Services. The Cash and Counseling state demonstration projects proved to be “an excellent option for states seeking to improve consumer and caregiver well-being” (Brown et al., 2007).

Community Resource and Planning Consideration

In the planning and budgeting process, it is very important to ask the right questions. In 1999, the University of Minnesota developed a guide identifying some of the key areas and questions to ask when making choices about living arrangements and community supports and services. Here is a brief overview of these issues. For more information, check out this link: