[Congressional Record Volume 144, Number 120 (Friday, September 11, 1998)]
[Senate]
[Page S10241]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]





               THE LISA DE LAND FINANCIAL PROTECTION ACT

 Mr. BAUCUS. Mr. President, today I introduce the Lisa De Land 
Financial Protection Act. The bill that I am introducing would allow 
the families of disabled persons to keep the money that they put in 
trust funds to care for their family members. Individual states would 
have the option of whether or not to recover those funds.
  Recently, Virginia De Land, a concerned Montanan contacted me 
regarding a problem that her family was facing. The De Land family is 
from Missoula, Montana. Their daughter, Lisa suffers from a genetic 
disease that has affected her since birth. It is called Williams 
Syndrome. Williams Syndrome is a rare genetic disorder that affects 
about 1 in 20,000 births. Those who suffer from the syndrome are 
missing genetic material on their seventh chromosome. They are 
excessively social people. They have low to normal IQ's, however they 
are often gifted musically and have great social interactions skills. 
People who suffer from Williams Syndrome are almost always extroverts.
  From the time that Lisa was small, her parents wanted to be able to 
assume some responsibility for her healthcare. At one point the family 
tried to buy an annuity. In order for Lisa to qualify for programs such 
as medicaid and SSI, the family's lawyer advised them to disinherit 
Lisa. If Lisa had other money set aside for her, she would have access 
to medicaid. For middle income families, it is virtually impossible to 
support a child with a disability on their finances alone.
  Self Sufficiency trust funds allow families to use money in a variety 
of ways. The money can be used for reasons as varied as the 
disabilities that individuals have. For example, if an individual has 
to live in a group home, money can be used to provide that person with 
a separate telephone in his or her room. In Montana, these trusts are 
great mechanisms that allow families help support loved ones. These 
trusts let families provide support without disinheriting a child and 
allow them to have ongoing participation in the healthcare process. For 
example, if Lisa had a self-sufficiency trust, she would still qualify 
for medicaid and her family would still be able to provide some 
assistance for her.
  With the implementation of the Medicaid Recovery Act, any trust that 
was set up would be recovered by the federal government when the 
medicaid recipient turned 55, or when that person passed away. Lisa's 
parent's had hoped that when she no longer needed the money from the 
trust fund, that money would go to the rest of their children. Current 
law requires the Government to recover that money, denying the other 
children access to it. Many people with disabilities have a short life 
expectancy. In this case, these families would not be affected by this 
law. However, Lisa has a normal life expectancy and with this law, the 
money that is set aside for her health care will be recovered by the 
government.
  It is important for individual states to have the option to choose 
whether or not these funds are recovered. Families across the country 
and in my home state of Montana are seriously affected by this problem. 
It is time to make a change in the system that will help out average 
families in extreme circumstances.
  Mr. President, I ask unanimous consent that the text of the bill be 
printed in the Record.
  There being no objection, the bill was ordered to be printed in the 
Record, as follows:

                                S. 2462

       Be it enacted by the Senate and House of Representatives of 
     the United States of America in Congress assembled,

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Lisa De Land Financial 
     Protection Act''.

     SEC. 2. STATE OPTION TO EXEMPT CERTAIN TRUSTS FROM THE ESTATE 
                   RECOVERY PROVISIONS OF THE MEDICAID PROGRAM.

       Section 1917(b)(1)(B) of the Social Security Act (42 U.S.C. 
     1396p(b)(1)(B)) is amended--
       (1) by redesignating clauses (i) and (ii) as subclauses (I) 
     and (II), respectively;
       (2) by striking ``In'' and inserting ``(i) In''; and
       (3) by adding at the end the following:
       ``(ii) At the option of a State, clause (i) shall not apply 
     in the case of an individual who, at the time the individual 
     received medical assistance under the State plan--
       ``(I) was disabled, mentally ill, or physically 
     handicapped, as determined by the State; and
       ``(II) was the beneficiary of a trust established under the 
     law of the State where the individual resided by the 
     beneficiary, a parent, grandparent, legal guardian, or at the 
     direction of a court for the purpose of providing or 
     supplementing the cost of the care and treatment for the 
     individual (including the cost of medical assistance provided 
     under the State plan),

     but only if State law provides that, upon the death of the 
     individual, not more than 90 percent of the value of the 
     trust may be conveyed to the heirs of the individual and that 
     the remainder shall be donated to a charitable trust approved 
     by the State.''.

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