Fragile X Info Series
There are a variety of transportation options to consider for the individual with Fragile X syndrome (FXS), and hopefully, some will be a continuation of what was started during the high school years. Knowing that there is a range of abilities in people with Fragile X syndrome, the goal is to make the individual as independent as possible. A second goal is to get the individual out of the home or living setting every day, as agoraphobia (fear of leaving the home) can happen to people with Fragile X syndrome as they age.
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.
Here are suggested contacts to find more information in your state about adult services:
YOUR LOCAL DISABILITY ORGANIZATION
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.
LOCATING STATE-SPECIFIC SERVICES
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
Your local Arc is also a good source of local and state information. The Arc is a national organization, with state and local chapters, who advocate for people with disabilities. Google “Arc of of [your state]” to find the chapter nearest the family. If there is not a chapter near them, contact the state office.
Seek out other parents in your community, regardless of the disability, especially if they have adults already in the system.
NFXF COMMUNITY SUPPORT NETWORK
Your local NFXF Community Support Network (CSN) group. CSN is our mission delivery arm and is comprised of volunteer-led chapters, community partners, and parent contacts. The dedicated parent volunteers who lead the CSN provide emotional and educational support to families and individuals living with Fragile X.
If you have questions about the CSN or are looking for information on a local group, you can also email firstname.lastname@example.org.
Transportation: Thoughts to Consider
Tracking Apps: Need to know where they are? There’s a lot of ways to do this using technology. Many of us at NFXF use them with our family, and find them a great way to watch out for each other. Ask for recommendations from friends, or search online↗.
Avoid Danger: While the goal is to teach skills and independence, you’ll want to also find a way for them to avoid dangers, such as traveling alone at night or running into bad weather. Some with Fragile X syndrome can’t resist following what they’re interested in, often right into a dangerous situation.
Government ID: Make sure they carry a government-issued ID. Call your local DMV for more information in your area.
Diversify: Think about teaching them more than one way to get around. Like taking the bus or train, walking, or carpooling.
Visual Aids: For some, visuals and social stories can be very effective tools for teaching them about their transportation options.
Whether they live at home or outside the home, driving them will likely be your most used option, which you’ll need for any appointments and especially if they’re having trouble with other transportation options.
Many people with Fragile X syndrome will be able to get a driver’s license. Check with your local DMV for information regarding special accommodations that they may need, such as extra time to take the test.
Paratransit is the term used to describe transportation services for people with disabilities that are designed to be more individualized. They may provide services along a set route, or they may provide door-to-door services. They may also provide bus training for individuals.
Depending on where they live, walking might be a great option. It will be situation and location dependent, but walking is a great way for them to get to know the area where they live, to get a chance to meet people who live nearby, and for exercise. (Also see: 5 Steps for Teaching Your Young Adult to Walk to Work)
Riding a Bike
Depending on where they live, riding a bicycle might be a great option for getting around town. It will be situation and location dependent, but, like walking, riding a bike is a great way for them to get to know the area where they live.
Riding a Bus
Another option for transportation around town, and even beyond, is taking the public bus. It does have its own set of challenges, but once they begin to understand the nature of public busing, it opens the geographic area of travel even wider. (Also see: Learning to Ride a Public Bus Independently)
Uber or Lyft
This is another transportation mode to consider for them. They may be able to set up a ride by themselves or the parent may do it. Research both sites and talk to people who have used both services to see if either is right for them.
Subway/Light Rail/Amtrak/Other Mass Transit Systems
These modes of travel will be similar to but more complicated than the public bus. They may be fine traveling during the day, but evening and nighttime travel should be limited. It’s also wise to travel in pairs or a small group.
Airplane travel is usually used for cross-country or international travel. While airport travel is often with families or other groups, individual travel may be needed in some cases. Like other modes of travel, discuss what to expect, create a social story, show pictures on the internet, if possible do a practice run at the airport, and allow for plenty of time.
If they need or wants practice in going through the airport experience, call your airport to see if they have special days set aside for people with disabilities to go through an airport. Also check with your local Arc, as they have set up a special program at many of the airports across the country. (Also see: Tips for Flying on an Airplane)
Adults with Fragile X Syndrome:
Making a Better Tomorrow
We have built the ultimate guide on transitioning into and continuing to care for adults with Fragile X syndrome. Our ebook includes chapters on:
Transition to Adult Services ♦ Transportation ♦ Housing ♦ Employment, Volunteering & Day Programs ♦ College & Post-Secondary Education ♦ Daily Living
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.
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 email@example.com or call (800) 688-8765.