States are experiencing extremely high demand for home and community services for people with developmental disabilities. Many states, even those that have substantially expanded their HCBS waiver programs over the past decade, have very long waiting lists for services.30 Many factors account for this high demand. One factor is the increasing longevity of this population, many of whom now live with parents who themselves are elderly and less able to meet the needs of their adult children.31 A second and related factor is that many people with developmental disabilities outlive their parents.
As a consequence, many states are rethinking the role that waiver services might play in meeting the needs of people with developmental disabilities--particularly with respect to increasing waiver services and supports for individuals who live with their families or have other informal caregivers who provide support. While requests for services and supports often take the form of families seeking a group home placement, in-home and family support services can often meet individuals needs so they do not have to leave the family home. States that make services and supports more readily available to people with developmental disabilities who live with their families, in fact, experience lower demand for services in group homes and other residential care settings.32
States rethinking is taking various forms. Some states have implemented distinct HCBS waiver programs intended mainly to provide services and supports to meet the needs of individuals who live with their families or on their own, with either informal caregiving available to them or the capacity to live without 24/7 supports. These programs do not offer services in group homes and other residential care settings that provide around-the-clock staffing, such as adult foster care.
These programs--called supports waivers--usually operate under stricter cost caps than the states parallel HCBS waiver program, which covers service in residential care settings, because the individuals being served have informal caregivers or less intensive support needs. These caps enable the state to avoid imposing service-by-service restrictions on utilization in order to maintain program cost-effectiveness.
Supports waivers also permit the state to give individuals and families considerable flexibility in selecting the mix of services and supports that best meets their needs. However, unlike state-funded family support programs, waiver services and supports must be for the direct benefit of the waiver participant. Although the HCBS waiver does allow for services that support families to give care to a family member with a disability, such as respite and family training, services that are primarily for the benefit of the family can not be covered under a Medicaid HCBS waiver.
The flexibility afforded individuals and families also permits states to reflect many of the principles and values under which developmental disabilities individual support and family support programs have operated for many years: namely, that the individual or the family be in a position to ensure that the services and supports they receive are tailored to meet their needs and preferences.33
The availability of Medicaid funding allows states to offer more comprehensive services and supports to families than has typically been the case with respect to state-funded family support programs, many of which allot only $3,000 to $4,000 to a family each year. Average annual expenditures per participant for all HCBS ID/DD waivers for FY 2008 were $43,464 per year.34 In a study of 16 states supports waivers in 2006, average annual participant expenditures ranged from $4,015 to $24,443.35
Operating distinct waiver programs that primarily target individuals who live with their families has both pros and cons. One of the main advantages is that when creating a new program state officials and other stakeholders are often more willing to consider new approaches to furnishing home and community services than when modifying an existing program. Supports and services can be selected that are especially relevant to meeting the needs of people who live with their families, paying particular attention to those that can strengthen and support informal caregiving.
The main disadvantages appear to be (1) the administrative complications associated with operating multiple HCBS waiver programs for the same general target population, and (2) the CMS requirement that states safeguard participants health and safety--even if their needs increase beyond what can be addressed within the waiver service cap.36