| As the families of individuals with special needs undertake
long-term financial and estate planning, they face critical
challenges and require professional assistance. Attorneys,
trust officers, and other estate planners, however, know that
financial planning is only one part of what needs to be determined.
Questions, such as, "Where will my child live after I
am gone?" and "Who will make sure that my family
member with special needs continues to have the highest quality
of life possible?" will be raised and need to be answered.
Parents, siblings and relatives who have a family member
with a mental, developmental or physical disability frequently
have the ongoing responsibility for their care and support,
far beyond that ordinarily required. This greatly impacts
the planning process. Primary concerns are the provision of
a safe, secure environment and the level of support and oversight
needed to assure that those with special needs have a high
quality of life long after family members are able to provide
it. The increase of people with disabilities who live on their
own or in supported living situations has contributed to the
concern of many families about the assurance of appropriate
long-term care.
Trust officers and conservators/guardians, who are usually
the ones with the fiduciary responsibility for a person with
special needs after the parents have died, often freely admit
to their understandable lack of expertise in defining and
providing the complex services required by an individual with
life long special needs and in the management of public benefits.
Siblings may be equally bewildered by these demands, and they
frequently live far away.
Care management services provide oversight and expertise,
including the individual advocacy and oversight essential
for assuring the highest quality of life for persons with
special needs. The concept of care management is based on
the need for an array of services that evaluates, plans, coordinates,
monitors and advocates for whatever services and supports
are needed. For individuals with special needs, these services
differ from typical care management services, often provided
for the elderly, because they are provided by those with experience
and training in addressing the complicated needs of individuals
with a developmental, physical or intellectual disability,
or a mental illness. There is a growing need for this type
of service, and the impact on professionals that provide services
(financial, legal and advisory) to families that fall into
these categories is undeniable:
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The number of person over age 65 will double over the
next 30 years (US Census Bureau, 2002) greatly impacting
those individuals who currently receive care at home. |
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The pool of family caregivers is dwindling. In 1990
there were 10 potential care givers for each person needing
care. In 2050 the ratio will be 4:1. |
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Nearly 27% of the adult population has provided care
for a chronically ill, disabled or aged family member
or friend in the past year. |
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In 2002, approximately 2.79 million of the 4.56 million
individuals with developmental disabilities in the United
States were receiving residential care from family caregivers,
and an estimated 708,000 (25%) of these caregivers were
over age 60. |
| · |
Between the 1970's and the mid-1990's, the mean life
expectancy for individuals with developmental disabilities
increased from 59 to 66 years. It is anticipated that
people with developmental disabilities, particularly those
without the most severe impairments, will soon have a
lifespan equal to that of the general population. |
| · |
In 2000, an estimated 641,000 adults age 60 and older
had been diagnosed with mental retardation and other developmental
disabilities; this number will double by 2030. |
Families have strong preferences regarding the future of
their family members, but less than one half of these families
actually develops a plan for the future. Families often do
not involve siblings in planning, even though it is a sibling
that most commonly takes over the responsibility for a family
member with special needs. Through a single coordinated approach,
care management services for people with special needs are
designed to provide services such as:
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Clinical assessments and evaluations; |
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Program and healthcare monitoring; |
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Consultation and coordination with professional caregivers; |
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Referrals to appropriate service providers and community
resources (when needed); |
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Regular client, caregiver and family communication; |
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Assistance in managing public benefits; and |
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Coordination with financial services partners, estate
planners, attorneys, and others. |
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Mind's Eye Designs