What information helps future caregivers support a child with disabilities?
Key takeaway
Information that helps future caregivers support a child with disabilities includes a Life Care Plan, an inventory of documents, and a Letter of Intent. Practitioners describe medical details, the people in the child's life, and the child's own ideas as the content of these records. Practitioners also describe these records as one part of the larger estate plan that an owner of a business, real estate, or private investments maintains.
A Life Care Plan gathers medical and personal contacts
A Life Care Plan outlines the important players in the individual's life. A Life Care Plan also gathers medical information such as physicians, therapists, prognosis, medical coverage, medications, treatments, allergies, and emergency instructions.
An inventory organizes documents for a fiduciary
An inventory involves gathering and organizing the most important documents a fiduciary needs to care for the child. Estate planning practitioners describe keeping the inventory in a three-ring binder with sections.
A Letter of Intent helps future care providers
A Letter of Intent can help future care providers understand and care for a loved one. Practitioners add that the letter does not overcome every obstacle in the transition to someone else's care.
Updating the letter regularly is a practice that practitioners describe, for example by reviewing it one day each year. Each review adds new important information and includes talking with the child to incorporate the child's ideas.
Family arrangements and the wider support system
Siblings are often ready, willing, and able to help care for a family member with disabilities. Estate planning practitioners describe problems arising later, and an understanding that the child will live with a sibling often does not work.
Special needs planning involves coordinating available dollars, community supports, and professional help. Trust and estate practitioners describe families building a support team, learning the system, testing supports, and building relationships with professionals and community resources.
A special needs trust is one piece of the plan. Practitioners describe the whole estate plan as the larger context, and a request to an attorney for a trust alone likely does not meet long-term objectives.
Planning gives families hope and tools. Planning cannot fully remedy deficiencies in the support system.