[Congressional Record Volume 151, Number 6 (Wednesday, January 26, 2005)]
[Senate]
[Pages S592-S593]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. GRASSLEY (for himself and Mr. Kennedy):
  S. 183. A bill to amend title XIX of the Social Security Act to 
provide families of disabled children with the opportunity to purchase 
coverage under the medicaid program for such children, and for other 
purposes; to the Committee on Finance.
  Mr. GRASSLEY. Mr. President, I am pleased to join once again with my 
good friend Senator Kennedy to introduce the Family Opportunity Act.
  The Family Opportunity Act provides states the option to allow 
families with disabled children to buy into the Medicaid program.
  Mr. President, Senator Kennedy and I have tried to get the Family 
Opportunity Act enacted for many years.
  The legislation has been scaled back dramatically as we have 
attempted to make the bill less costly. For example, the original 
proposal, introduced in the 106th Congress would have set a family's 
eligibility at 600 percent of the Federal Poverty Level, would have had 
an enhanced administrative match and provided coverage for children up 
to age 21.
  The version we are introducing today sets the family's eligibility at 
300 percent of Federal Poverty Level, no administrative match and 
provides coverage for children up to age 18.
  I am very hopeful that these modifications will ensure that the 
Family Opportunity Act can be enacted this year.
  The legislation is consistent with the ``compassionate conservative'' 
agenda advanced by the President and the Congressional leadership.
  It helps families stay together. In some cases, in order to provide 
for the special needs of their child, parents face the unbearable 
prospect of having to put their child in an out of home placement just 
to keep their child's access to Medicaid covered services.
  Some of these parents have to refuse jobs, pay raises and overtime in 
order to preserve access to Medicaid for their child with disabilities. 
These parents are hard working taxpayers.
  There is precedent for allowing individuals with disabilities to 
continue to have access to the services that Medicaid provides while 
enhancing their income and self-esteem through the dignity and the 
contribution to society that one attains through engagement in the 
world of work. It only makes sense to extend these principles to adults 
with a child with a disability.
  The Family Opportunity Act is an option for States. It is not a 
Federal mandate. Additionally, it encourages the use of private 
employer sponsored coverage. Hopefully a participating family has some 
private insurance. The Family Opportunity Act would allow states to 
offer ``wrap around'' services that the employer sponsored coverage 
does not provide, such as physical therapy, mental health services and 
customized durable medical equipment.
  Children with significant disabilities need these services in order 
to properly develop into responsible and contributing members of 
society.
  Additionally, the legislation would provide for the establishment of 
demonstration projects regarding home and community based alternatives 
to psychiatric residential treatment facilities for children.
  Under current law, states are not allowed to offer home and community 
based services as an alternative to inpatient psychiatric hospitals. 
The legislation proposed by Senator Kennedy and myself would help 
realize this goal for these children.
  The Family Opportunity Act would make progress in correcting this 
omission by allowing for demonstration projects to test the 
effectiveness in improving or maintaining a child's functional level 
and cost-effectiveness of providing coverage of home and community 
based alternatives to psychiatric residential treatment for children in 
the Medicaid program.
  Finally, the Family Opportunity Act would provide for the development 
of Family to Family Health Information Centers which help guide 
families

[[Page S593]]

through the maze of programs and networks associated with the 
challenges of raising a child with a disability.
  The Family Opportunity Act is a good bill. For many years it has 
garnered the support of a majority of Senators. It has the support of 
numerous family and child advocacy groups.
  This legislation is pro-family, pro-work and pro-compassion. I urge 
the quick enactment of the Family Opportunity Act.
  Mr. KENNEDY. Mr. President, it is an honor once again to join my 
colleague Senator Grassley in introducing the Family Opportunity Act to 
remove the health care barriers for children with disabilities that so 
often prevent families from staying together and staying employed.
  We know that families of disabled and special needs children continue 
to struggle to help their children learn to live independently and 
become fully contributing members of their communities.
  Eight percent of children in this country have significant mental or 
physical disabilities, and many of them do not have access to the 
critical health services they need to improve their lives and prevent 
deterioration of their health. To obtain needed health services for 
their children, families are often forced to become poor themselves, 
stay poor, put their children in out of home placements, or even give 
up custody of their children so that the children can qualify for the 
broad health coverage available under Medicaid.
  In a recent survey of 20 States, families of special needs children 
report they are turning down jobs, turning down raises, turning down 
overtime, and are unable to save money for the future of their children 
and family so that their child can stay eligible for Medicaid through 
the Social Security Income Program.
  Today we are reintroducing legislation intended to close the health 
care gap for the Nation's most vulnerable population, and enable 
disabled children and their families to be equal partners in the 
American dream.
  As President Bush said in his ``New Freedom Initiative'' on February 
1, 2001, ``Too many Americans with disabilities remain trapped in 
bureaucracies of dependence, and are denied the access necessary for 
success and we need to tear down these barriers''.
  The Family Opportunity Act will eliminate the unfair barriers that 
deny needed health care to so many disabled and special needs children.
  It makes health insurance coverage more widely available for children 
with significant disabilities, through opportunities to buy-in to 
Medicaid at an affordable rate.
  It allows States to develop a demonstration program to provide needed 
Medicaid services to children with psychiatric illnesses, instead of 
limiting such coverage to a residential or institutional setting.
  It establishes Family to Family Information Centers in each State to 
help families with special needs children.
  The enactment of the Work Incentives Improvement Act of 1999 
demonstrated the commitment of Congress to do all we can to enable 
people with disabilities to lead independent and productive lives. It 
is time for Congress to show that same commitment to children with 
disabilities and their families.
  I look forward to working with all members of Congress to enact this 
legislation and give disabled children and their families across the 
country a genuine opportunity to fulfill their dreams and fully 
participate in the social and economic mainstream of the Nation.
                                 ______