Planning to Replace the Irreplaceable Parent
For aging parents with children who are special needs adults, planning ahead is an important step in seamlessly transitioning care. We spend a good part of our day helping families navigate the long-term care system to secure care for a senior. Many families do not realize that we also assist in planning for the families of seniors. Most parents of children with disabilities are aware of the necessity to plan financially for their child. However, they may not have considered living and care arrangements for their child, regardless of the child’s age. Some families realize the need for such planning but do not want to face the parents’ inevitable aging and death. Such a “head in the sand” approach can ultimately be traumatic for special needs adults.
We have worked with many families where an aging parent has a medical crisis that leaves the parent needing long-term care. Prior to needing long-term care, however, the aging parent was the primary care provider for an adult child with disabilities. Once appropriate care is secured for the aging parent, particularly if the care is in a long-term care community, then the crisis of the child’s care begins.
In many cases, these children have been disabled since birth and have been living with their parents. The parents have always been the care providers, so the special needs adults may not be receiving any public benefits or community services, and their children may not have been involved with any other care providers. When the parent is no longer available, either because of illness or death, the child is not only faced with losing the parent as a primary care provider, but the child may also face the dilemma of leaving the only home the child has ever known. Such life-changing transitions are difficult for any child, but for the child with disabilities, these transitions can be traumatic. When the parent has a medical crisis or dies, some type of transition will be inevitable and necessary.
In some of these situations, families can make temporary arrangements for special needs adults to live temporarily with the child’s other family members until they can find a more permanent solution. It is stressful for the individual with disabilities. This individual is now removed from both the care of the individual’s beloved parent and the individual’s familiar environment. This individual is also placed into the chaos of someone else’s life.
In the worst-case situations, there are either no family members living in the local area or none who can provide adequate care. Therefore, there is an immediate crisis for special needs adults in both the short-term and long-term. To avoid such a crisis, it is critical for the parent of a child with disabilities to devise a plan for that child’s care in the event the parent can no longer be the caregiver.
Here are several planning objectives that parents of children with disabilities should pursue. The first objective is to ensure that the child is receiving as many benefits and services as possible. Some available benefits, such as Medicaid waiver programs, have long waiting lists, and people may be on the lists for years. There may be programs available in the community through the community services boards and local recreation centers. Many parents have followed their natural instincts to shield their child with disabilities. In many cases, however, if it is possible for special needs adults to be involved in a sheltered work program or community activities, the child may become more independent than initially thought possible. If the child has a relatively high level of independence, then there may be more community alternatives and housing options available. The parent will also want to ensure that the child’s health care benefits will remain intact after the parent’s death.
Another planning objective involves assessing housing options in case the parent is no longer available to be the primary caregiver. If the child will be living with siblings or other family members, then in many cases, it is a good idea for the child with disabilities to spend time with the potential caregivers in the caregiver’s home before a crisis occurs. This can make the eventual transition easier and more comfortable, and the person with disabilities is more likely to thrive in the new environment. The situation is more difficult if special needs adults will not be living with family members if the parent becomes ill or dies. Families should consider transitioning the child to a new environment (such as a group home) while the parent is still available. The parent can then monitor the transition to the new environment and ensure that the child receives the care that the parent desires. This also gives the parent the peace of mind that the child will not have to experience the disruption that can occur at the parent’s illness or death.
Each family’s situation is different. However, they all share one thing in common: the need to adequately plan to transition care for their family members with disabilities. Planning for the inevitable certainly provides the best result for everyone.
