I recently attended the Special Needs Planning Symposium. The sessions were all very informative, but it was the opening session that really stands out for me, ‘Proactive and Next Generation Planning for Families That Include a Loved One with Disabilities.’ The panel of presenters in the session really brought to light how important it is to consider the needs of the whole family in the plan.
Parents of special needs children are, understandably, focused on planning for the future of that special needs child. They see that the planning must cover a variety of issues; who will manage the assets set aside for the child; who will see to the child’s care needs; and what financial planning must be done to ensure that there are enough assets to provide for that child?
Just as important, however, is planning for the future of the other family members. Parents of special needs children will one day retire from their jobs, just like all other parents. Financial planning must be focused also on the parents’ retirement planning. In essence, the retirement planning must be directed toward ensuring the comfortable retirement of both the parents and the special needs child.
Parents of special needs children also become elderly and require assistance. Imagine if you were the oldest sister of a special needs child whose elderly parents now require someone to cook and shop for them and can no longer manage all the care needs of the special needs child. Without long-term care planning, whether through savings, insurance or both, all of this family care will fall on you. This is an impossibly heavy burden to place on anyone, especially someone who is busy with a career, raising her own family and trying to save for both college and her own retirement. Good special needs planning for this and similar scenarios also including financial planning for the siblings of the specials needs child.
Many parents of special needs children envision their special needs child living at home with the parents throughout their lives. It may be best for the special needs child in the short term to remain in the home that is familiar and comfortable with the parents who love him and understand his needs so well. But in the long term this plan may not be best for anyone. If the special needs child outlives either his parents or their ability to care for him, a transition will have to occur. This transition to a new living arrangement can be traumatic if it must happen abruptly and without the support and involvement of the parents, due to their age or deaths. For most families, special needs planning must include at least investigating other possible living arrangements.
The care and support of a special needs person comes from three sources: (1) unpaid family time and energy; (2) private family funds; and (3) third party benefits. The parents of a special needs child recognize that they will be dedicating their own time, energy and money to the care and support of their child. When the planning looks far enough into the future it becomes clear that maximizing government benefits now can mean reducing the burden on the other family members, both in time/energy and financial terms, in the future.
It is almost a cliché, but it is particularly true in special needs planning that ‘it takes a village.’ The planning must be broad enough and forward-looking enough to include the whole family.