How do we help our loved ones gain independence? Individuals must either acquire independence through assistance or it must be purchased through family members or through government agencies. How is that possible? It is possible if parents take the initiative by beginning the planning process for their children’s lifetime themselves. This includes not only estate and financial planning, but also includes life planning with checks and balances to make sure that such a system will work.
Supported Living is a residential service option for individuals with developmental disabilities that can provide a flexible support system and supports/services which will enable a person to live and be active in the community. Emphasis is placed on supporting people in homes or apartments of their choice. Supported living allows the individual and his/her family and other circle members to hire and fire staff, develop and individualized support configuration that makes sense for that specific person, to develop back-up and emergency support and assist the person to live a full, rich life in the community. Supported living is the answer that families are seeking. The question is, how do we plan for it?
The most expensive component of a supported living plan is its housing component. Although Regional Centers are becoming more creative in providing supported living arrangements, Regional Centers are not purchasing homes for individuals due to the cost. In order for our children to reside in a home, we must be the ones to provide that for our children.
There are many alternative models, for providing supported living. The following ideas are the basic blueprints for you to provide supported living. A house may be purchased out of funds from a Special Needs trust. Residual funds must be left to provide for the supplemental and emergency needs for your son or daughter. It is also possible to leave your family home in trust for your disabled child to reside in by themselves or with friends or relatives.
First and foremost, the house must be held either in your living trust or in the special needs trust. If the special needs trust, is irrevocable, there will be a step up in basis for property tax purposes which may be a disadvantage to holding the property in a special needs trust. The living trust then becomes a vital tool in order to provide this type of planning. Funding must be set aside to provide for maintenance, insurance, property taxes, and emergency repairs. Funds may also need to be provided if you will be providing payment to a family member for providing those caretaker services.
Contingency plans must also be put into place to provide what will happen to your son or daughter if the initial care provider could no longer provide the supported living services.
Two or three alternatives must be given to your successor trustees and conservators such as utilizing a Regional Center vendor to provide supported services, an emergency plan placement with a family member or even in a group home should be listed.
Family members must realize that supported living planning is an ongoing process. The plan that you envision now, may not necessarily be the plan that is actually put into place for your loved ones. Flexibility must be the cornerstone of the plan with you setting the parameters.
Estate planning, in its very nature is an ongoing process. A will drafted in 1970, would not meet your needs today. People move in and out of our lives for various reasons and pass away. What is in place now may change 25 years from now.
Once a plan begins to take shape, it is vitally important to involve the Regional Center in your plan by placing into your son or daughter's IPP the long range goal of living in a supported living situation. Families must also be very clear as to their intent of whether or not other individuals should reside with your son or daughter and whether or not those individuals may be other Regional Center consumers or other roommates.
Supported living is an option even for those families who do not have relatives to rely upon to help them implement the plan. The use of professional trustees and Master Trust of California can provide the necessary financial assistance and advocacy services to assure that your son or daughters needs will continue to be met in any living situation.
Gifting it to family, friends, and non-profit organizations also can become an option. I have seen plans involve the gifting of a house to a group home in exchange for their lifetime care. New organizations continue to arise in this arena, such as H.O.M.E., and Community Resources, Inc., which are designed to assist in obtaining housing and purchasing housing for independent and supported living.
Remember, there is no guarantee that the Regional Center will fund a supported living program especially when it is family members providing those services.