Housing Options for Adults With Fragile X Syndrome: Parents Share Their First-Hand Experiences

A panel of parents joins us and shares their unique experiences establishing housing options for adults living with Fragile X syndrome. This one-hour Q&A session, moderated by NFXF Executive Director Hilary Rosselot, is filled with great insight and helpful tips. Each panelist shares the challenges, complexity of available options, and successes they experienced as they navigated local and state resources to find suitable housing options for their loved ones.

At the end of the webinar, each parent shares the greatest success from their personal experience with establishing housing for their loved one. They share how their loved one’s independence (with appropriate support) expanded. Lastly, they all agreed it was comforting that each of their loved ones enjoyed visits to the family home or going on community outings but were reassured when they requested to return to their home!

During the webinar, the parents expressed ideas and important reminders for others to consider when exploring housing options for their loved ones:

• Contact your local ARC. To locate your local chapter, try the Arc chapter finder, or search for “Arc” and your state name.
• Contact the department in your state that supports individuals with developmental disabilities. The name may vary from state to state:
• Ask the caseworker or state department for a list of ALL options that may be available.
• Identify and navigate financial resource options that may be available.
• Special Education teachers and staff are a great resource in knowing what options may be available in your area.
• Speaking with other families and parents, regardless of the disability, may give you valuable insight and tips in navigating the options in your area:
• Tell the specific agency, host home, or organization that you are looking for references and wish to speak with others who have used their services.
• Understand the terminology. For example, one panelist shared an option of a “host home.” While another panelist shared that in their area this type of option was referred to as a “foster home.”