By Kristin Bogart

Parents and caregivers have found it challenging to find suitable housing for adults with learning or developmental disabilities. Affordability, accessibility, and discrimination are just some of the many issues that have turned the issue into a national crisis.

On the housing side, organizations face challenges with policies and regulations, the diverse needs and levels of independence of their tenants, aligning services with employment opportunities, managing transportation, and more.

Adult services may be limited and difficult to access, so how does a parent deal with that nagging question that keeps them up at night: What will happen when I’m gone?

We invited three guests to talk about their unique experiences in developing housing options for their clients and/or adults with Fragile X syndrome.

Susan Buchanan is a parent who created housing for her son in their home.

Anita Inz placed her son in an apartment through POINT↗, an independent living program.

Our third guest, Dushawn Powell, is a social worker and director of the residential facility Hearts & Minds Inc.↗.

Each of our guests prepared a video about their story and housing solution prior to the live webinar. To view all three videos plus a replay of the live webinar, fill out the form here and you’ll receive access via email to view at your convenience.

LEARN MORE

Exploring Parents’ Concerns Regarding Long-Term Support and Living Arrangements for Their Children with Fragile X Syndrome
There is limited information about planning for the future of individuals with Fragile X syndrome. This study looks at what those concerns and challenges are from the parents and families perspective.

Living Settings for Adults with FXS
As your child grows into a young adult, you may consider independent or semi-independent living settings. There are a variety of living settings across the United States for people with developmental disabilities.

Guidelines for Establishing a Private Home
By establishing a private home, parents have more control over the situation, including whether the home is closer to them, their own or their child’s work, and public transportation. They can also bring in their own care providers, if needed. This is very appealing to some families.

Moving from Pediatrics to Adult Services —Webinar
Based on her decades of experience, we present this 30-minute slide and audio presentation by Dr. Marcia Braden. It’s designed primarily for professionals treating children with Fragile X syndrome who are looking to transition their patient into adult care, which we’ve made available to both professionals and non-professionals (families, parents).

Transition to Adult Services for Individuals with Fragile X Syndrome
From our treatment recommendations written by members of the Fragile X Clinic & Research Consortium committee, and written for professionals working with Fragile X syndrome patients, and made available as a resource to families and parents.

author
Kristin Bogart, Senior Director, Development and Communications

Kristin Bogart
Kristin joined the NFXF team in 2019. She has over 20 years of experience in fundraising and non-profit management, event planning, and board and volunteer development. She earned a bachelor’s degree in economics and a master’s in public administration. Kristin loves spending time with her two teenage sons and in the company of friends, and enjoys gardening, running, and hiking in the Santa Cruz mountains.