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

With Susan Buchanan, Nancy Carlson, Tracey Franks, and Ileen Rissmiller

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!

Personal Stories and First-Hand Experiences

Guided by moderator Hilary Rosselot, our four guests — Susan Buchanan, Nancy Carlson, Tracey Franks, and Ileen Rissmiller — discuss adult housing for individuals living with developmental disabilities from their perspective as parents.

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.”

Before the live webinar, we asked each of the presenters to prepare a video about their housing options. We then asked registered attendees to review them prior to the live webinar so they could prepare their questions, which they discuss in the video.

These are the videos shared with attendees, and where you can find more in-depth information on each housing option from each of our presenters:

Note: Video will open in a larger window when clicked.

Susan Buchanan

Susan describes her process for determining options for her daughter Jessie. Currently, Jessie is living in a host home.

Note: Video will open in a larger window when clicked.

Nancy Carlson

Nancy describes the community-based home that her son, Derek, is living in. The home is shared with roommates and managed by a local agency.

Note: Video will open in a larger window when clicked.

Tracey Franks

Tracey discusses the community housing option that her son, Nicholas, is thriving in. He is currently living in an apartment that is a part of the local affordable housing program with collaborative support funded through the local Regional center to provide 24/7 support staff.

Note: Video will open in a larger window when clicked.

Ileen Rissmiller

Ileen shared her adult son is living in a condo, with a roommate, that is owned by Ileen and her husband with additional 24/7 caregiving support.

Housing for Fragile X Adults — Susan Buchanan

Housing for Fragile X Adults — Nancy Carlson

Housing for Fragile X Adults — Tracey Franks

Housing for Fragile X Adults — Ileen Rissmiller

about

Missy Zolecki, Director, Community Empowerment

Missy Zolecki
Missy joined NFXF team in 2018 after being an active volunteer since 2010. Missy organized several fundraisers and educational workshops while serving in her volunteer role. Missy is the mother of three children. Her eldest son, Matt, lives with Fragile X syndrome. Prior to joining the NFXF team, Missy had worked as a nurse for more than 20 years. She enjoys traveling and spending time with family and friends.

Housing Options for Adults With Fragile X Syndrome: Parents Share Their First-Hand Experiences — Webinar | NFXF (original) (raw)