People with disabilities face many of the same issues with long term care that elderly people face. They also face certain additional problems with long term care because they are often younger and at a different stage of life.

Since Medicare does not cover long term care services, younger people who do not have their own substantial resources have to depend on the Medicaid system. These younger people with disabilities face the same Medicaid rules that require "spend-down" of income and resources.

The Need

The long term services and supports needed by children and adults with disabilities range widely from personal assistance services, rehabilitation, supported living services, to nursing care services. There is tremendous grassroots pressure to secure community services, based on functional need, which include hands-on or supervisory assistance or training in daily tasks or health-related functions. This would include eating, toiletting, grooming, dressing, bathing, and transferring as well as meal planning and preparation, managing finances, communicating by phone and other media, and getting around and participating in the community.

The Current System: Medicaid

Federal Medicaid law has an inherent bias toward providing long term care services in 24-hour facilities rather than in an individual's own home. While many states have developed home and community based services for certain segments of their populations, the systems often fail to meet the full extent of need in the state (such as for people with mental retardation or related developmental disabilities) or they fail to address whole groups of people (such as people with physical disabilities who do not have mental retardation).

The lack of appropriate home and community support services is further compounded by the fact that younger adults with disabilities who want to work are unable to save money for their personal and family needs (emergencies, repairs, education) or for their retirement years without making themselves ineligible for the very support services that make it possible for them to work.

Many people with disabilities who must rely on the Medicaid system for long term supports and services feel trapped in institutions and nursing homes while many others feel equally trapped in poverty.

Since the federal-state Medicaid partnership is the largest source of long term support at the state level, the character of Medicaid as a low-income program and as a primarily facility-based program influences the development and implementation of all other local programs.

Other Issues

Families with children with disabilities and adults with disabilities are unlikely to find their long term support needs met by private insurance. For those insured people recently disabled, private insurance caps are soon met. For those people who are already disabled, private long term care insurance is not an option available to them.

In recent years, states have seen growth in the number of lawsuits by advocates for people with disabilities seeking to secure more individualized, integrated, home and community based long term services and supports.

Quality assurance issues in both facility and community-based settings require constant vigilance. The need to protect highly vulnerable people from harm must continually be balanced with the need to ensure the greatest degree of self-determination, choice, and community integration possible.

Demand is Growing

Long term services and support issues, along with Social Security issues, are basic life issues for people with significant disabilities. For a growing proportion of the disability community, these issues have risen to the highest priority. People with disabilities want to make the important choices in their own lives. However, current service systems often determine whether an individual can get on with life in his/her home community in the company of family and friends or whether the individual must leave family and home to live in congregate care settings such as nursing homes or intermediate care facilities for people with mental retardation (ICF/MR).

There is already a strong grassroots movement; encompassing people with all types of disabilities, to change the structure of the federal long term care systems to focus on community integration and consumer choice. Legislative and other efforts are expected to continue to increase in coming months and years.

Facts

• The national average cost of serving a person in a Medicaid-funded ICF/MR in 1996 was $94,000, while the average cost of Medicaid-funded home and community based waiver services in 1996 was about $27,000.*
  
  
• In 1996, the states used the Medicaid home and community based services waiver to serve 185,000 people with mental retardation or related conditions. During the same year, 134,000 people with mental retardation or related conditions were served in Medicaid ICFs/MR (ranging from programs serving 4 persons to large congregate state institutions).*

* From The State of the States in Developmental Disabilities, Braddock, Ph.D., David, et al., 1998.