By Kirsten Brown, Christopher Hughes, Christianna Ratty, Megan Welsh, and Karen Riley
Parents and other caregivers must consider many factors as young people with Fragile X syndrome approach the transition from high school to adulthood. Although the concept of transition to adult services for concerns such as housing, employment, medical needs, and other general life services may seem straightforward, the process of planning and obtaining adequate care for adults with special needs can be quite complicated. Transition is a multi-faceted and individualized process that involves securing support services that best support the individual’s move to post-secondary education and/or employment, independent living, and community participation. These services require a significant amount of paperwork and are solidly embedded in various bureaucratic systems, which can often be overwhelming to families.
In order to provide crucial support to families and students prior to, during, and through the transition process, the National Fragile X Foundation (NFXF) partnered with the University of Denver’s Morgridge College of Education (DU MCE) on a project that would supplement the NFXF website with information pertaining to this unique time in the lives of individuals with Fragile X syndrome and their families. The information gathered by students working in this course-wide project under the direction of their faculty advisor was originally put on the LINKS Group website. Due to the localized nature of policies around service delivery for individuals with disabilities, the information gathered during the project focused on the state of Colorado, but the thrust of this article is on general guidelines the authors trust will be useful to families across the country.
Eight Useful Tips
The following tips for parents and guardians to consider when attempting to access adult services for their child is by no means an exhaustive list, but is based on important information the DU MCE students discovered when researching adult services for those with Fragile X syndrome.
- Plan early.
Individuals with Disabilities Education Act (IDEA) requires that transition planning start by the time the student reaches age 16. Transition planning may start earlier (when the student is younger than 16) if the IEP team decides it would be appropriate to do so. Parents and legal guardians have a legal right under the IDEA to be a member of their child’s Individualized Education Program (IEP) team. When beginning the transition process, the IEP team should collaborate to formulate goals that will develop skills necessary for living, socializing, and working in adulthood. This is the optimal time to begin this process and to initiate inquiries and applications. Resource: General Educational Guidelines for Children with Fragile X Syndrome for additional IEP guidelines.
- It is never too late.
Though early planning is helpful, do not be discouraged if your child is already older than 14. It is never too late to secure appropriate services for your child.
- Pursue Adult Agencies Actively
Unlike with children’s services, disability alone does not guarantee individuals will be served through adult services. Eligibility criteria may be narrower and services are not mandated, nor are they individualized. Waitlists exist in adult agencies—and they are often lengthy. For these reasons, families should pursue adult agencies actively and persistently.
- You can appeal initial rejections.
Initial rejection for services is frequent, but can often be appealed. Learning to advocate for you or your loved one’s needs is a valuable lesson in working through the complicated process of accessing adult services.
- Practice persistence and patience.
It may seem like a monumental task to find all the information regarding how to access transition and adult services for your child. But time and again, persistence and patience pay off. Many important pieces of information may only be accessed by searching a text or website thoroughly, or by clicking on multiple links. With this in mind, it can be very helpful to ask trusted family or friends to help in your search. One way to do this is to form a group and divide up responsibilities, with each of you taking a piece and reporting back to the group.
- Look for comprehensive toolkits.
Individual states within the U.S. often differ in the allocation of various adult services, making universal guidelines for transitions very difficult to create. However, many states offer comprehensive toolkits as guidelines for families considering adult services for their child. These toolkits describe arange of support services and usually offer agency contact information. Typically, an Internet search of your state Department of Education will lead you to their Special Education page where a transition toolkit might be found. An example Transition Toolkit from Colorado.
- The Internet is your friend, but don’t hesitate to call agencies directly for guidance.
Several government agencies, services, and policies listed below provide useful information. An Internet search for the websites of the agency or policy within your state should supply further details. Although websites can be helpful, don’t hesitate to call agencies directly for answers to your questions and ongoing guidance. You’ll want to tap as many sources as possible in learning how to successfully set up transition services for your child.
- Your state’s Division for Developmental Disabilities (DDD) provides information about residential services, supported living services, and family support loans. An Internet search of “[insert your state] Division for Developmental Disabilities” will lead you to the appropriate website.
- The Division of Vocational Rehabilitation (DVR) is responsible for helping individuals with disabilities obtain employment. A child can apply for DVR assistance when the focus shifts from education to employment. The DVR is also a state-based agency; thus, an Internet search of “[insert your state] Division of Vocational Rehabilitation” will take you to the appropriate website.
- Medicaid, Social Security Disability Insurance (SSDI), and Supplemental Security Income (SSI) are important gateways to accessing a range of services, ranging from health care to assistive technology and therapeutic support services. Check to see if your state offers Medicaid waivers that provide coverage for transition services, homemaker services, transportation, personal care, specialized medical equipment and supplies (including assistive technology), dental and vision services, supported living consultation, behavior support services, and employment services. Securing SSI is very important as it often serves as a gateway to other services. Information about federal SSI can also be found at www.ssa.gov/ssi/. This is also connected with federal SSDI, which can be found at www.ssa.gov/pgm/disability.htm.
- Ask your case manager about gaining an Individualized Service and Support Plan (ISSP). The ISSP is critical for acquiring behavior supports, home-based services, and Supportive Living Services (SLS) Waivers.
8 Don’t forget general life planning.
Finally, it is important to think about general life planning, such as legal issues (including trust funds, guardianships, or conservatorships and protections from abuse and neglect under the Americans with Disabilities Act), housing (the various options and how to apply), transportation (the different types, hours of availability, and the locations served), employment, and recreational activities.
Transitioning your child to adulthood may seem complicated and challenging, but there are many resources in place to help you achieve your goals. Not the least of these is the National Fragile X Foundation and the increasing numbers of parents involved in its Community Support Network. Contact the Foundation for information, support, and referrals.
As for the public agencies whose support you will need, it is always a good idea to contact them early to help plan for future services. Getting “ahead” helps give you a better view of the road ahead and makes the process less overwhelming.
As always, patience, persistence, and advocacy are important components in navigating adult services. Professional advocates can also be useful resources to help take some of the burden off your shoulders. Consult local resources or an NFXF Community Support Network group in your area for information and referrals to qualified professionals.
NOTE: Visit the Life Strategies page for additional information.
The authors thank the project contributors in the research that formed the basis of this article: Susan McDonald, Amy Reyes, Kinshasa Vargus-Pile, Nikki Lehman, Lauren Williams, Lucy Iraola, Adla West, Aimee Siebert, Alisa Noble, Felicia Montano, Kathryn Petersen, Kim Sayer, Lesa Schirmacher, Marcy Willard, Tegan Davis, Vivienne Houghton, and Vy Nguyen. Karen Riley, PhD, is faculty supervisor in child, family, and school psychology at the University of Denver. Email: firstname.lastname@example.org.