By Letha Sgritta Mcdowell
Elder law attorneys spend a good part of their time helping families
navigate the long-term care system to secure care for a senior. Many
families do not realize that elder law attorneys also assist in planning
for the families of seniors. Most parents of children with disabilities
are aware of the necessity to plan financially for such a 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 the child with disabilities.
Recently Oast & Hook has seen several cases in which an aging
parent has a medical crisis that leaves this parent in need of 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 facility, then the crisis of the child's care begins. Oast
& Hook has also seen situations in which the aging parent died
without a care plan for the child.
In many of these cases, the child has been disabled since birth and
has been living with the parent. The parent has always been the care
provider, so the adult disabled child may not be receiving any type of
public benefits or community services, and this child 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, 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 the adult child with disabilities 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 also 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 are able to provide adequate care.
Therefore, there is an immediate crisis for the child with disabilities
for both the short-term and long-term. In order 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
There 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 as well
as local recreation centers. There may also be work programs available
through organizations like The Endependence Center and the ARC. Many
parents have followed their natural instincts to shield their child with
disabilities. In many cases, however, if it is possible for the child
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 at 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 caregiver's 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 the child
with disabilities will not be living with family members if the parent
becomes ill or dies. Families should consider transitioning the child to
the 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 is receiving 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.
The attorneys at Oast & Hook can assist families with their
estate, financial, insurance, long-term care, veterans' benefits, and
special needs planning issues.
Letha Sgritta McDowell is a partner at Oast & Hook, P.C., and
she practices in the areas of long-term care planning, estate planning,
estate and trust administration, and business planning. Ms. McDowell is
licensed to practice law in Virginia and North Carolina.
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