Adulthood 21+ Years
Transition to Adult Services for Individuals with Fragile X Syndrome
The problems at this stage are an extension of many issues discussed in the previous sections. The transition to adulthood is difficult for all individuals, but particularly so for individuals with Fragile X syndrome. Programs for adults with developmental disabilities usually provide a range from minimal to more extensive supervision, so that the adult with Fragile X syndrome can live in an apartment setting and perform a job each day.
Daily living skills are taught in school and in most adult programs. Some adult males learn how to drive, but the vast majority learn to use public transportation to travel to jobs or visit family and friends. Vocational training is important for utilizing cognitive abilities optimally at work, and this training should be started in high school. Studies have demonstrated that adaptive behaviors in Fragile X syndrome continue to improve even into adulthood, with particular strengths in daily living skills.
Local support agencies can provide ongoing support for programming in the vocational area. Behaviour problems in the workplace should be discussed with the patient’s physician and therapist.
Once an adolescent has graduated from high school, there is no guaranteed program that takes up where school leaves off. Each community provides a variety of programs, and they are not consistent from province to province. You can contact your local Community Living and find out about what services and programs are available in your area. For comprehensive information on the transition from adolescence to adulthood, visit http://www.fragilex.org/living-with-fragile-x/adults-with-fragile-x-syndrome-book/
People with Fragile X Syndrome have a normal life expectancy, so parents and families have to make long-term plans to provide for their needs. You can contact your local support agencies for guidance in this area. There are workshops and seminars held to guide and advise in the area of financial planning. You may also want to look at a Personal Planning Guide. Contact your Provincial Ministry of Community and Social Services for a copy.
In Canada, the Registered Disability Savings Plan (RDSP) helps parents and others save for the long-term financial security of a person with a severe disability. In general, any person under the age of 60 who is eligible for the Disability Tax Credit (Disability Amount) and resident in Canada can establish an RDSP. If the person is a minor, their parent or legal representative may establish the RDSP for their benefit.
The lifetime contribution limit for an RDSP is $200,000, with no annual limit. Anyone can contribute to the RDSP with the written permission of the plan holder. Contributions are not tax-deductible and are not included in income when paid out of an RDSP. Investment income earned in the plan accumulates tax-free. However, grants, bonds and investment income earned in the plan are included in the beneficiary’s income for tax purposes when paid out of the RDSP.
For more information on RDSPs, visit the Canada Revenue Agency Web site at or call 1-800-959-8281 (TTY users call 1-800-665-0354).
Article 19 of the UN Convention on the Rights of Persons with Disability states: “Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.”
The range of residential services varies depending on the provider agency and province you live in. For example, residential services may range from independent apartments with “follow-along” counselling to 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 if different agencies offer different but equally desirable services. 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 and gives the best support for that individual.
A person may be quite independent in self-care and daily living skills and fully able to live in an independent apartment, but not have the same level of skills and independence at work. This situation would require a more flexible approach to residential and vocational needs than some programs are capable of. For people with more limited cognitive functioning, or with limited tolerance for change and uncertainty, a more structured environment (which may look more restrictive to an observer) may actually permit 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 most people spend longer and longer time away form home until they are on their own. In fact, residential programs vary widely in their approach to new residents. One method of transition that families may find helpful is to seek respite services at a residential agency before the individual moves in. This affords new residents the opportunity to both test the environment and meet other residents and caregiving staff.
Unfortunately, there is a great shortage of residential services, so parents and family members have to start planning early, inform themselves about available options and advocate vigorously for the person with Fragile X Syndrome.
As with housing, the range of services varies. For example, vocational programs can range from competitive employment with job coaching services to supervised crew labor and sheltered workshop employment to adult day care. In the case of persons with more limited cognitive functioning, or with limited tolerance for change and uncertainty, a more structured environment (which may look more restrictive to an observer) may actually permit the person more comfortable functioning and therefore access to more activities than he or she could tolerate in a less structured setting.
In general, people with developmental disabilities should be in situations that are as close as possible to what is “normal” for a person of that age, and in vocational environments that least restrict their freedom.
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 individuals and families, and identifying and working with professionals knowledgeable or interested in Fragile X syndrome.
Some of the above material was excerpted from: Adulthood– Andrew Levitas, M.D. Medical Director, Division of Prevention and Treatment of Developmental Disorders,University of Medicine & Dentistry of New Jersey/SOM