Fragile X Info Series
The Individuals with Disabilities Education Act (IDEA) is legislation ensuring eligible, disabled students are provided with whatʼs called free appropriate public education, which is tailored to their individual needs through age 21 (there are some variations in each state).
As the person with FXS leaves high school and attends transition services typically included for ages 18–21 (or the age in your state), the next move is into adult services. It is important to realize that the services under IDEA come to an end. There is currently no equivalent law that guarantees adult services after IDEA.
It is also important to note that after your young adult leaves high school, it’s up to parents/care providers to set up their day — 24/7 that is, 24 hours a day, seven days a week.
Who To Contact
YOUR LOCAL DISABILITY ORGANIZATION
VARIES BY STATE
Hopefully, people from this organization have been coming to the IEP meetings the last few years at the high school. Check in with them to see how long the wait lists are, and make sure your young adult is on the correct wait list for the services that they will need.
Find government and local disability programs through USA.gov, or search on your own for your location (try searching for: [your state] disability programs).
Also find your state’s plan and local centers for independent living.
YOUR LOCAL ARC
PROTECTING YOUR HUMAN RIGHTS
The Arc is a national organization advocating for people with disabilities. Find your state and local chapters.
SEARCH LOCALLY
Seek out other parents in your community, regardless of the disability, especially if they have adults already in the system.
NFXF COMMUNITY SUPPORT NETWORK
Having your young adult move out of your home is a big step and consideration and care should be taken every step of the way.
Find an NFXF local chapter or a parent with adult children to talk to with our interactive map.
If you have questions about the CSN or are looking for information on a local group, you can also email csn@fragilex.org.
Understand Your Housing Options
Create a list of what is important to you and your young adult. The goal is for you to create a list of housing options that will meet you and your young adult’s needs.
When to start?
When your young adult is in high school, but it’s never too late.
What do I ask?
- How does the housing system work in our state and county?
- Is there a waiting list and how long is the wait? How do I get on the wait list?
- What are the housing options?
- What do I have to do to move this process forward?
Why isn’t there a list of housing options in my area?
- The options vary widely from state to state, and often even from county to county.
- The needs of people with FXS vary widely.
- The “wants” of parents vary widely.
Adult Housing Considerations
Location: There may not be an option near you if that is important to you, while at the same time options near you may not be best for the person with FXS.
Roommates: When receiving public funding, parents can’t usually pick the roommates, that is, there’s little control over the people who live with the person with FXS. The roommates could also change, which could happen without your knowledge.
Staff Turnover: There can be frequent staff turnover.
Educational/Life Skills Component: Do you want to have a situation that is more educationally based, not really a college, but somewhere in between?
Housing Options: There are a range of living situations that may be considered, depending on the person’s level of independence and the source of funding, among other aspects — everything from a more segregated setting to an independent setting.
Section 8 Vouchers: This is a Department of Housing and Urban Development (HUD) program, which is the federal government’s major program for assisting very low-income families, the elderly, and the disabled, to afford decent, safe, and sanitary housing in the private market.
Helpful Resources
Download our helpful resources below, or get them all, plus much much more, in our new comprehensive guide for Adults With Fragile Syndrome: Making a Better Tomorrow.
LIVING SETTINGS CHECKLIST
What to look for when evaluating living settings for your adult child, from the physical structure to facility staffing to social development and interventions.
CARE PROVIDER INTERVIEW GUIDE
Employment questionnaire laws and regulations differ from state to state. Get our list of questions you might ask a potential care provider for your young adult.
FRAGILE X 101 EBOOK
This guide helps answer questions about common physical, cognitive, and behavioral issues. Fragile X inheritance and treatment options are also included, plus much more.
LEARN MORE
Transition to Adult Services for Individuals with Fragile X Syndrome
Our recommendations on transitioning to adult services from the Fragile X Clinical & Research Consortium.
8 Tips on Transitioning Your Child to Adult Services
To provide crucial support to families and students prior to, during, and through the transition process, the NFXF partnered with the University of Denver’s Morgridge College of Education to bring you these tips.
DOWNLOAD THIS PAGE AS A PDF
Adult Housing
A starter guide for after high school and after IDEA services end at age 21, and adult living decisions need to be made for your adult child.
How We Can Help
The NFXF is dedicated to serving the entire Fragile X community to live their best lives by providing the knowledge, resources, and tools, until, and even after more effective treatments and a cure are achieved. Learn more with Fragile X 101.
If you have questions please reach out to us at treatment@fragilex.org or call (800) 688-8765.
THANK YOU
Featured image by Engin Akyurt from Pixabay.
Document image by ma03 from Pixabay.