If you are affected by LOTS, housing is an important consideration. Your needs will change, depending on how much support you need and what you can afford. Planning your long-term housing needs will empower you to live independently, comfortably and safely as the disease progresses. NTSAD can help you find the housing option that best meets your needs.
Think about home modifications and services you’ll need 5, 10, or even 15 years down the road and plan accordingly. Give yourself plenty of time to find the services, funding and resources to live safely and independently. Don’t wait until you are unable to safely use the stairs or bathroom.
Many people affected with LOTS live with family members, including a spouse, parents, children, siblings, or other relatives. In some cases, you might be eligible for a certain amount of assistance with daily care if your family members are unable to provide the kind of care you need.
Also see Independent Living
Each State differs in available resources depending on where you live and your personal situation. Find out what is available for you. Ask:
Plans, a manual and instructions are available from Wheel Chair Ramp, www.wheelchairramp.org. They may be used by any one with basic skills. A 30 minute video, "Tips for Building Modular Ramps and Steps" demonstrates many of the building techniques in the manual.
National Tay-Sachs & Allied Diseases Association
2001 Beacon Street
Suite 204
Boston, MA 02135
info@ntsad.org
800-906-8723 phone
617-277-0134 fax
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