Fragile X Info Series
Fragile X Info Series: Adult Living - Transportation

Adult Living — Transportation

You can download the PDF to print and share, and the full text is also on this page.

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.

Overview

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.

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

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 csn@fragilex.org.

Boy walking his bike down a treed street

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.

Transportation Options

Driving

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

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.

Walking

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

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)

PED XING sign

5 Steps for Teaching Your Young Adult to Walk to Work

While walking isnʼt always be feasible, we have tips for teaching your young adult to walk to work, which you can adapt for other destinations.

5 STEPS TO TEACH WALKING TO WORK
School bus at curb with a mother and son on the sidewalk

Learning to Ride a Public Bus Independently

Being able to ride a bus independently is a great accomplishment. It opens up a world of opportunity for your child.

RIDING A BUS INDEPENDENTLY
Young boy sitting in an airplane seat

Tips for Flying on an Airplane

Flying on an airplane with your child or adult with Fragile X syndrome can be very stressful for both of you. These tips are provided by parents based on their experiences with their own children.

TIPS FOR FLYING ON AN AIRPLANE
Adult Life ebook cover

Adults with Fragile X Syndrome:
Making a Better Tomorrow

We are building the ultimate guide on transitioning into and continuing to care for adults with Fragile X syndrome, one chapter at a time — and you only need to get it once.

It’s super easy (and free). Download your copy now and we’ll send you updated versions as each chapter becomes available.

GET YOUR COPY OF ADULTS WITH FXS
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.

Fragile X Info Series: Adult Living - Transportation
DOWNLOAD THIS PAGE AS A PDF

Adult Living — Transportation

Your fact sheet on various transportation options for your adult child with Fragile X syndrome.

How We Can Help

The National Fragile X Foundation offers help for today and hope for tomorrow with personalized support, community, education, awareness, advocacy, and research.

If you have specific questions about what to expect, treatments, clinics … well, just about anything, please email us at treatment@fragilex.org or call (800) 688-8765.

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Fragile X Info Series: Fragile X Syndrome: For Kids of All Ages
Fragile X Info Series: Newly Diagnosed
Fragile X Info Series: Your In-Person Visit to a Fragile X Clinic
Fragile X Info Series: Females and Fragile X
Fragile X Info Series: Testing
Fragile X Info Series: Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)
Fragile X Info Series: Fragile X-Associated Primary Ovarian Insufficiency
Fragile X Info Series: Siblings
Fragile X Info Series: Adult Housing
Fragile X Info Series: Adult Living — Volunteering, Day Programs & Employment
Fragile X Info Series: Back-to-School Resources
Fragile X Info Series: Adult Living - Transition to Adult Services PDF cover

Boy in airplane mage by aditomo68 from Pixabay