Living Settings for Adults with FXS

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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.

As you begin your search, these are aspects to consider:

Funding

Self-funding

You can create a living setting or join with others to create a setting for a group of young adults, to do what you think is best for your young adult.

State funding

You may have a wait list (sometimes years), you may be limited to where your child lives, and you may/may not have a say in who lives with your child.
  • It is important to note that your young adult is not guaranteed anything when he or she turns 21 years old.
  • Every state has its own process for people with disabilities to be considered for state funded services.
  • Every state has different levels of services they provide to people with disabilities.
  • Find out how your state works and learn about all the various levels of services.
  • Make sure you are on the appropriate waiting lists.
  • Get to know your case manager or the person who will help you obtain the services your young adult needs.

Your young adult’s needs

  • Location – how far do you want them from you? Is there access to the community?
  • What is the number of other people your child could be living with?
  • What will they do during the day? Afternoon? Evening?
  • How will they get around? Walk, ride bike, bus, car?

The staff

  • Who will do training on Fragile X?
  • How will training on Fragile X be accomplished?
  • What has been the turnover rate of the staff?
  • What is the format of communication with the staff/care providers?
  • How do they handle challenging behaviors?
  • Can you speak with parents of other young adults in the setting?
  • Do they handle the doctor appointments, making them and taking your young adult?

The various types of living situations

The following are some of the types of living arrangements that may exist in your area:

  • Completely independent.
  • Solo living environment with intermittent case manager/care provider.
  • Shared living environment – numbers of people will vary depending on local zoning laws.
  • Shared living environment with intermittent case manager/care provider.
  • Communal living, such as a “Camp Hill“ environment.
  • Group home—numbers can vary—with a care provider(s) always onsite.
  • Host home – One or more persons living in a “family” environment.
  • Residential/assisted living with larger number of residents and opportunities to explore various types of employment and increased living skills.
  • State institutions/developmental centers, only considered for individuals who are a danger to themselves or others.

Note: States or regions may have various terms for identical living situations. For example, one state might call a setting “prevocational training residence” and another state might refer to the same setting as “assisted living.”

There may be other variations of the situations listed above, but the most important consideration is to evaluate your child’s individual needs when considering a living setting.

Living Settings Checklist

We have created a Living Settings Checklist for your use. This Excel file can be printed off and used while you consider possible living situations.

Other aspects to consider

  • Can you “try” a setting out?
  • Is there a requirement on how quickly your young adult has to transition into a setting? Some may require you to do it within a week, some may give you up to a month.
  • What kind of plans are in place to help your young adult integrate into the setting and getting to know other people he or she will be living with?
  • How does the wait list work in your area? If a slot comes open and you or your young adult is not ready, do you go to the bottom of the list?
  • What happens if an emergency placement needs to be made?
  • How does guardianship (or whatever option you chose) or lack thereof come into play?

Where to begin?

  1. Talk to your local disability organization.
  2. Talk to other parents.
  3. Call your local ARC.
  4. Google – residential living for people with developmental disabilities.
  5. Office for People with Developmental Disabilities.

Examples of residential facilities

This is an exciting time for you and your young adult. Enjoy the journey!

Author
Jayne Dixon WeberJayne Dixon Weber has been a member of the NFXF team since 2007 and currently serves as the director of education and support services. She has two children—one, an adult son with Fragile X syndrome, the other, a daughter who is an occupational therapist. In addition to assisting with the development of the NFXF’s Adolescent and Adult Project, Jayne authored the book Transitioning ‘Special’ Children into Elementary School and is the editor for the book Children with Fragile X Syndrome: A Parents’ Guide. She is also the co-leader of the Colorado Fragile X CSN chapter. Jayne likes to read, enjoys photography, and goes for a walk every day.
Feel free to share your stories with me at treatment@fragilex.org. I’d love to hear from you.