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!
Housing Options for Adults With FXS: A Panel Discussion With Parents Sharing First-Hand Experiences
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:
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.
Additional Resources
As you begin to consider housing options, we have resources available to help navigate and guide you and your loved one.
- Transitioning to Outside Housing for Your Adult Child | Info Series (fragilex.org)
- Living Settings Checklist (fragilex.org)
- NFXF Care Provider Interview Questions (fragilex.org)
- The NFXF Adult eBook chapter on housing (pages 27 – 42).
- October 2022 NFXF Webinar Series – Housing Options for Adults with Fragile X syndrome
- Adulthood and Fragile X Syndrome
about
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.