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Adults with Fragile X Syndrome: Making a Better Tomorrow

We are building the ultimate guide to transitioning into and continuing to care for adults with Fragile X syndrome, one chapter at a time. Our free ebook helps you — parents and caregivers — make a better tomorrow for adults with Fragile X syndrome. They deserve it!

As with all of our digital resources, this is provided free of charge, because the ability to pay shouldn’t stand in the way of giving help and hope to those living with Fragile X.

The first five chapters — 77 pages of information and practical advice — are now available to download.

How It Works

When you request your free copy of Adults with Fragile X Syndrome, you instantly receive all completed chapters.

1. Transition to Adult Services
2. Transportation
3. Housing
4. Employment, Volunteering, Day Programs
5. College and Postsecondary Education

Then, as each chapter is complete, we’ll send you a new ebook with the additional chapter added. This continues for each chapter. When the ebook is complete, we send you a final copy. Upcoming chapters:

6. Activities of Daily Living
7. Social Development
8. Behavior, Mental Health, and Medications

What you’ll find in just the first five chapters:

1. Transition to Adult Services

IDEA • waitlists • SSI • health insurance • transitioning to a doctor who sees adults • Medicaid waivers • the ABLE act • guardianship and other alternatives • DMV-issued photo identification • registering for Selective Service • registering to vote • financial planning • post-secondary education • and more.

2. Transportation

Driving • paratransit • walking • riding a bike or bus • Uber and Lyft • subway/light rail/Amtrak and other mass transit systems • airplane travel • extended car trip and travel ideas • and more.

3. Housing

Sources of funding • types of housing options • Section 8 vouchers • independent living • establishing a private home • living settings checklist • sample care provider interview questions • parent stories • and more.

4. Employment, Volunteering, Day Programs

Transition program while still in school • when school services end • finding a job • interview form and checklist • developing appropriate work attributes • modifying the work environment • employment opportunities resources • sample resume • and more.

5.  College

When school services end • resources • inclusive postsecondary opportunities • conquering college • scholarships • stories • and more.

Pair of hands holding Adults With Fragile X Syndrome ebook