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Leading the Fight to treat and cure
Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

Independent Living

Late Onset (LOTS)
Tay-Sachs, Sandhoff and GM1 diseases

If you are affected by LOTS, Home Modifications are key to independent living.  Here are some ideas on how to find funding and/or resources to help you modify your home for safe, secure independent living

Funding Resources

Funding resources to promote independent living are scarce and vary greatly by state. Here are some resources that might be available in your state. You are your own best advocate! Ask, ask again and ask again until you find the resources you need. NTSAD is here to help every step of the way!

  • Contact your governor's office of disabilities, local district representatives and council to learn about resources in your state / area. Let your politicians work for you!
  • Click here to learn about the Medicaid Home and Community-Based Services Waivers available in your state! Search for 1915c waivers in your state; many cover personal care attendants, case management, therapeutic services, medical care, technological and physical aids
  • Explore your state's Vocational Rehabilitation Office for additional resources
  • Contact your local Independent Living Center for advice on services and how to fund them

Modifying your Home with Help

Building your own ramp or doing simple home modification can be an affordable option with some help from people with basic carpentry skills. To help defray costs, ask if a local service organization, school carpentry class, or carpenters union would build your ramp as a service project. Be sure to consult with a Physical or Occupational Therapist to ensure the modifications will meet your long-term needs. Get your community involved and get it done!

Community Resources

There are many groups that may volunteer to assist build home modifications. Some of them are:

  • Local churches, temples, colleges, vocational schools and high schools which may have community programs to provide volunteers to assist with the labor
  • Ambucs www.ambucs.com
  • Civitan International www.civitan.org
  • Habitat for Humanity www.habitat.org
  • Connect America movement founded by Points of Light Foundation www.pointsoflight.org
  • Lions www.lionsclubs.org
  • Local hardware stores and lumber yards may donate or discount supplies. Remember to consider your climate when selecting outdoor materials; it is worth the extra expense for rust -resistant materials!
  • City or County Community Development Agencies or Housing Redevelopment Authorities may know of programs in your area that provide home modification assistance to people in their communities.
  • The State Vocational Rehabilitation Program may assist eligible individuals with home accessibility modifications, if the modifications are needed for getting and maintaining employment.

It is common for a combination of resources to be used for home modifications. Many programs have limited funds available and may be able to offer only partial assistance. Working with more than one agency or organization is often necessary. Persistence is one of the best tools to getting it done!

 

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