[Congressional Record Volume 147, Number 20 (Tuesday, February 13, 2001)]
[Senate]
[Pages S1346-S1347]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. GRASSLEY (for himself, Mr. Kennedy, Mr. Jeffords, Mr. 
        Baucus, Ms. Snowe, Mr. Rockefeller, Mr. Daschle, Mr. Breaux, 
        Mr. Conrad, Mr. Graham, Mr. Bingaman, Mr. Kerry, Mr. 
        Torricelli, Mrs. Lincoln, Mr. Akaka, Mr. Bayh, Mr. Biden, Mrs. 
        Boxer, Mr. Byrd, Mr. Chafee, Mr. Cleland, Mrs. Clinton, Ms. 
        Collins, Mr. Corzine, Mr. Crapo, Mr. Dayton, Mr. DeWine, Mr. 
        Dodd, Mr. Domenici, Mr. Dorgan, Mr. Durbin, Mr. Edwards, Mrs. 
        Feinstein, Mr. Frist, Mr. Harkin, Mr. Helms, Mr. Inouye, Mr. 
        Johnson, Mr. Kohl, Mrs. Landrieu, Mr. Leahy, Mr. Levin, Mr. 
        Lieberman, Mr. Lugar, Ms. Mikulski, Mrs. Murray, Mr. Nelson of 
        Florida, Mr. Reed, Mr. Reid, Mr. Roberts, Mr. Santorum, Mr. 
        Sarbanes, Mr. Schumer, Mr. Smith of Oregon, Mr. Thomas, Mr. 
        Thurmond, Mr. Warner, and Mr. Wellstone):
  S. 321. 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, it is with great pleasure that I 
announce the introduction of the Family Opportunity Act of 2001. I 
pledge my commitment to working with Senator Kennedy and others in a 
bi-partisan, bi-cameral way for the passage of the Family Opportunity 
Act this year.
  We have a common-sense bill. Our bill is pro-family because it keeps 
families together. It's pro-work because it lets parents work without 
losing their children's health care. It's pro-taxpayer because it lets 
people earn money and help pay their own way for Medicaid coverage.
  Why is this legislation so necessary? As a parent, your main 
objective in life is to provide for your child to the best of your 
ability. Our federal government takes this goal and turns it upside 
down for the parents of children with special health care needs. The 
government forces these parents to choose between family income and 
their children's health care. That's a terrible choice.
  Families have to remain in poverty just to keep Medicaid. Obviously 
this affects entire families, not just the child with the health care 
needs. The story of an Iowan family illustrates this point. Daniel, the 
18-year-old son of Melissa Arnold, can't work part-time for fear of 
jeopardizing his brother's Medicaid coverage.
  I know of another family whose son was paralyzed after a diving 
accident. The family exhausted $1 million of private insurance. Then 
they had to pay $1,500 a day on their own just to keep their son alive. 
Yet another family has a 4-year-old son who functions at an infant's 
level. This little boy takes anti- seizure medication that costs about 
$150 every two weeks. His nutritional supplement is $10 a day. He'll 
always wear diapers. All of those costs come out of his parents' 
pocket.
  Most families just can't afford those costs.
  Why is Medicaid so desirable? It's critical to the well-being of 
children with multiple medical needs. Medicaid covers services that are 
difficult to find in private health plans. A child with a severe 
disability may need special medical equipment or physical therapy on a 
regular basis just in order to be able to eat.
  Our bill creates a state option to allow working parents who have a 
child with a disability to keep working and to still have access to 
Medicaid for their child. Parents would pay for Medicaid coverage on a 
sliding scale. No one would have to become impoverished or stay 
impoverished to secure Medicaid for a child.
  The legislation recognizes a universal truth. Everybody wants to use 
their talents to the fullest potential, and every parent wants to 
provide as much as possible for his or her children. The government 
shouldn't get in the way. I look forward to working with my colleagues 
for passage of the Family Opportunity Act this year.
  Mr. KENNEDY. Mr. President, it is an honor to once again join my 
colleague Senator Chuck Grassley in introducing the Family Opportunity 
Act of 2001--the hallmark of which is to remove the health care 
barriers for children with disabilities that so often prevent families 
from staying together and staying employed.
  Despite the extraordinary growth and prosperity the country is 
enjoying today, families of disabled and special needs children 
continue to struggle to keep their families together, live 
independently and become fully contributing members of their 
communities.
  More than 8 percent of children in this country have significant 
disabilities, many of whom do not have access to critical health 
services they need to maintain and prevent deterioration of their 
health status. To get needed health services for their children, 
families are being forced to become poor, stay poor, put their children 
in out of home placements, or simply give up custody of their 
children--all so that their children can qualify for the comprehensive 
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 (SSI) Program.
  Today we are reintroducing legislation intended to close the health 
care gap for the Nation's most vulnerable population, and enable 
families of disabled children in this country to be equal partners in 
the American dream.
  In the words of President George W. Bush in his ``New Freedom 
Initiative'', ``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 of 2001 will tear down the unfair barriers 
to needed health care that so many disabled and special needs children 
are being denied.
  It will make health insurance coverage more widely available for 
children with significant disabilities, through opportunities to buy-in 
to Medicaid at an affordable rate.
  It will allow states to develop a demonstration program to provide a 
medicaid buy-in for children with potentially significant disabilities 
who without needed health services will become severely disabled.
  States will have more flexibility to offer disabled children needed 
health services at home and in their communities.
  It will establish Family to Family Information Centers in each state 
to help families with special needs children.
  The passage of the Work Incentives Improvement Act of 1999 showed the 
commitment of this Nation to ensure that people with disabilities have 
the right to lead independent and productive lives without giving up 
their health care. It is now time for Congress to show that same 
commitment to our country's children with disabilities and their 
families.
  I look forward to working with all members of Congress to move this 
legislation forward and give disabled children and their families 
across the country a better opportunity to fulfill their dreams and 
fully participate in the social and economic mainstream of our Nation.

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