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Future Planning for Senior Caregivers of Individuals with Special Needs

The task of planning for the future of an individual with special needs can be intimidating and stressful.  If you are an aging caregiver yourself, the need to plan for the future is even more imminent.  Many caregivers of individuals with special needs ask themselves: Who will care for my loved one once I am no longer able to? Where will he or she live? Where will financial support come from? Who will advocate for him or her? These are common questions, all which should be asked in preparation for when caregivers can no longer care for an individual with special needs due to their own advancing age or death. By planning for their future now, caregivers can establish parameters for the level of care needed in the future and prepare family and friends for their future roles and responsibilities.

Many aging caregivers have not been able to adequately prepare their adult children with disabilities for inclusion in the community and/or their independence, which presents unique transitional challenges for those adult children.  Without adequate planning, individuals with disabilities can be left without support.  Oftentimes, people wait to deal with Future Planning issues until the time of crisis, rather than working with a qualified professional before the crisis occurs.  By taking steps towards developing a plan for the future and executing it with the proper legal documentation, future comfort and security can be facilitated through present choices.  By planning ahead, seniors and people with special needs can help to ensure a better quality of life and that they have the services and support they need as they get older. 

There are many aspects to consider when developing a successful future plan.  Families should consider involving the individual with special needs as much as possible in order to consider his or her wishes for the future and the best method of supported-decision-making in daily and major life decisions.  A good future plan reflects the wishes of the person with special needs, and also includes the wishes of parents, siblings, extended family members and friends, and other important people in the family network. The main focus of the plan should be the person special needs’ interests, preferences, and skills.

To begin special needs planning, caregivers should consider meeting with an Elder Law attorney to discuss their individual situation.  Elder Law attorneys practice a specialized form of law that involves representing, counseling, and providing services to  improve the lives of seniors, people with disabilities, and their families.   When looking for an Elder Law attorney to help with Special Needs Planning, families should seek someone who has experience and knowledge working with families of and individuals with special needs. 

Friends, colleagues, and other professionals who have engaged in special needs planning can serve as a good referral source in finding an attorney who is knowledgeable in the special-needs area of estate planning.  In addition, local special needs organizations can offer valuable insight into local resources and professionals that can help with special needs planning.  Oftentimes, special needs organizations have worked with professionals and resources in their community and are able to easily identify valuable services and resources.

A competent Elder Law Attorney should be able to assist with the following matters: Wills, Power of Attorney, Living Will, Guardianship, Special Needs Trusts and other estate planning issues. These documents will help with the future needs of an individual with disabilities and will help ensure that he or she will be eligible for public benefits.

If a caregiver or family member plans to leave an inheritance to an individual with disabilities, they should consider creating a Third Party Special Needs Trust.  A trust is a legal arrangement by which a person or financial institution, called the “trustee,” holds legal title and manages money for the benefit of a person called the “beneficiary.”   A Third Party Special Needs Trust, if established and administered correctly, allows a family member to leave money for the benefit of an individual with a disability.  The individual remains eligible for vital government benefits such as Supplemental Security Income (SSI) benefits, Medicaid and/or Waiver Services.  Leaving an individual with special needs an outright inheritance may result in a loss of these government benefits.

There can be many challenges and stress involved with the future planning process.  As you work through this process, it is important to remember that you are taking steps towards ensuring the future comfort and security of your loved one, an effort that will be long remembered and appreciated by many.  


Rebecca Tyers Brown
ACHIEVA Family Trust

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