Planning for Financial Security
Publicly funded programs and supports for people with disabilities are limited in their scope and availability.
Eligibility criteria are often stringent and waiting lists are long. A resource guide describing what is available
in Kentucky can found at www.ihdi.uky.edu
. and www.kycares.ky.gov
. An additional website for children and adults
with intellectual disabilities can be found at www.findafuture.org
Publicly-funded supports, while usually essential for a person with a disability to live a meaningful live in the
community, do not pay for everything. They essentially pay for “people supports” to provide personal assistance
and guidance in day-to-day tasks and activities that individuals cannot perform by themselves. In addition to
direct care, families often provide financial resources to provide for a positive quality of life. These expenditures
can range from payment for additional medical, dental or therapeutic services that are not covered by Medicaid,
Medicare or private insurance; clothing; computers and internet service; entertainment, including cable television,
movies and other recreational activities, and celebration of birthdays and other special occasions.
Working with a financial advisor can be very helpful as there is great deal of complexity in figuring out the
financial need, as well as the means to provide for the need. The following companies have specialists who
have been trained to work with families who have children with disabilities to assist in planning for their
Merrill Lynch (www.askmerrill.ml.com/snc
Northwestern Mutual Financial Network (www.nmfn.com
In order to protect a person’s eligibility for SSI and/or Medicaid, family members will need to establish a
Special Needs or Supplemental Needs Trust to hold the assets for their member’s benefit. A special needs trust
makes it possible to appoint a trustee to manage the assets thereby retaining or qualifying the person with a
disability for government benefits. The assets in the special needs trust do not belong to the person with a
disability as the trust is established and administered by someone else. Furthermore, the trustee is given
the absolute discretion to determine the disbursements from the Trust.
Trustees have a great deal of responsibility and need to understand the parameters by which they must function
in order to safeguard the person’s eligibility for benefits. A Trust, as a separate legal entity, may also have
to file an income tax return based upon investment earnings or distributions.
Trustees would be wise to seek legal counsel, utilize the services of a CPA for tax return preparation, and obtain
the book Special Needs Trust Administration Manual: A Guide for Trustees
by Barbara D. Jackins, Richard S. Blank,
Peter M. Macy, Harriett H. Onello, and Ken W. Shulman (People with Disabilities Press at iUniverse, 2005).
It can be ordered from (www.DisABILITIESBOOKS.com.
In the section “Safeguarding Your Plan, a list of knowledgeable attorneys in Kentucky who can establish a Special
Needs Trust can be found. For families who have a child with intellectual disabilities, they may want to instead
explore opening an account with the Kentucky Pooled Special Needs Trust established by Cedar Lake Foundation.
For more information, contact them at (502) 425-5323 or www.cedarlake.org