|
Living Away from Home: An introduction
Public Law 94-142 mandates educational alternatives for all children and adolescents with developmental disabilities through age 23. After that, each state
provides an array of residential and vocational programs. These, not unlike our college system, vary not only by state but by localities within each state. They may be public, private subcontractors, private non-profit or
for-profit. Almost all have a basis of funding in Medicaid or Medicare/Medicaid, and are more or less subject to those guidelines. What this means in practice is that treatment planning, staffing patterns, and other requirements
are driven by the standards of the dominant funding agencies, in a way analogous to the way local school districts vary (but perhaps not much) in their approaches to following state guidelines. Just as educational planning in the
schools follows the Individualized Educational Plan (IEP) format, treatment planning for adults with developmental disabilities follows the Individualized Habilitation Plan (IHP) format, and the two closely resemble each other in
their patterns of periodic goal-setting meetings bringing together family members and/or guardians, case managers and agency professionals and care-givers. As in the IEP, this is the place where individual needs are negotiated and
reconciled with the available services.
The range of services varies from provider agency to agency. For example, residential services may range from independent apartments with "follow-along" counseling, through supervised
apartments to group homes, with some agencies providing the full range of services and some not. Some agencies provide both residential and vocational/day care services, others only one (meaning the person and family must deal with
two sets of providers). Securing some needed services may mean shifting from one agency to another, with all the attendant trade-offs if different agencies offer different but equally desirable services, a process of varying
difficulty.
The guiding values–the ideology, if you will–of the system is Normalization, and the principle of the Least Restrictive Environment. That is, every person with developmental disabilities should be in
a situation that is as close as possible to what is "normal" for a person of that age and in a residential and vocational environment that least restricts his or her freedom.
A person may be quite independent in the skills
of self-care and daily living, more than able to live in an independent apartment, but not have the same level of skills and independence at work, requiring a more flexible approach to residential and vocational needs than some
programs are capable of. In the case of persons with more limited cognitive functioning, or with limited tolerance for change and uncertainty, a more structured environment, which looks to an observer to be "more restricted"
actually permits the person more comfortable functioning and therefore access to more activities than he or she could tolerate in a less structured setting.
Transition to a residential program should ideally be gradual,
analogous to how all of us spent longer and longer times away form home until we were on our own. In fact, residential programs vary widely in their approach to new residents. One method of transition families may find helpful is
to seek respite services at a residential agency before the individual moves in. This affords new residents and the opportunity to both test the environment and meet other residents and caregiving staff.
Another approach to
the issues of adults with developmental disabilities, fully applicable to persons with fragile X syndrome, is that of customized, family-constructed services. In one version, a family, assisted by a broker, assembles a program of
services to be purchased and creates a budget to be submitted to their state Developmental Disabilities agency. This can include a family-supervised apartment, in-home supervision, or the like. The advantage to such an approach is
that the family remains in control of daily living and day program, in effect creating its own IHP.
The chances are that none of the above is sufficiently specific to apply to any one person or family. There is obviously no
one best way to approach these issues or solve these problems, no ideal program or all-encompassing collection of programs. However, the likelihood of success in adulthood can be maximized by attention to family and community
systems, active intervention and advocacy, ongoing family involvement, the cultivation of friendships, the identification of dedicated and caring people willing to work with people and families, and identifying and working with
professionals knowledgeable or interested in fragile X syndrome.
Excerpted from:
Adulthood in Fragile X Syndrome: A Mental Health Perspective
–Andrew Levitas, M.D.
Medical Director, Division of Prevention
and Treatment of Developmental Disorders,
University of Medicine & Dentistry of New Jersey/SOM
Additional Resources from the ARC:
http://www.thearc.org/communityliving.html
|
