[Congressional Record Volume 146, Number 33 (Wednesday, March 22, 2000)]
[Senate]
[Pages S1607-S1608]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. GRASSLEY (for himself, Mr. Kennedy, Mr. Jeffords, Mr. 
        Harkin, and Mr. Reed):
  S. 2274. A bill to amend title XIX of the Social Security Act to 
provide families and disabled children with the opportunity to purchase 
coverage under the Medicaid Program for such children; to the Committee 
on Finance.


                     Family Opportunity Act of 2000

  Mr. GRASSLEY. Mr. President, I rise today with my colleagues Senators 
Kennedy, Jeffords and Harkin in introducing the Family Opportunity Act 
of 2000. This new legislation will make life easier for many families 
and their children.
  When you're a parent, your main objective is to provide for your 
child to the best of your ability. If it takes a 12-hour day in the 
field or in the factory, that's what you do. Our federal government 
takes this goal and turns it upside down for 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 
must have a low income to qualify their children for both Medicaid and 
federal disability benefits. This means parents often refuse jobs, pay 
raises and overtime just to preserve access to Medicaid for their child 
with disabilities.
  Families have to remain in poverty just to keep Medicaid.
  Obviously this affects entire families, not just the child with the 
health care needs. Melissa Arnold, an Iowan, has a 17-year-old son who 
can't work even part-time for fear of jeopardizing his brother's 
Medicaid coverage. Ms. Arnold has accepted several promotions without 
the pay raises she's earned. Despite these challenges, this family has 
stayed together.
  In the worst cases, parents give up custody of their child with 
special health care needs or put their child in an out-of-home 
placement just to keep their child's access to Medicaid-covered 
services. Why is Medicaid so desirable? It's critical to the well-being 
of children with multiple medical needs. It covers a lot of services 
that these children need, such as physical therapy and medical 
equipment.
  Private health plans often are much more limited in what they cover. 
Many parents can't afford needed services out-of-pocket. Today, my 
colleagues and I will introduce legislation to fix the Catch-22 for 
parents of children with disabilities.
  Our bill, the Family Opportunity Act of 2000, 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.
  Our bill also establishes family-to-family health information 
centers. These centers would be staffed by actual parents of children 
with special needs as well as professionals. They would provide 
information to families trying to arrange health services for their 
children.
  The Family Opportunity Act of 2000 is modeled after last year's 
successful Work Incentives Improvement Act. Under that law, adults with 
disabilities can return to work and not risk losing their health care 
coverage. Parents of children with disabilities should have the same 
opportunities as adults with disabilities.
  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.
  Mr. KENNEDY. Mr. President, it is an honor to join my colleagues 
Senators Grassley, Jeffords, and Harkin in introducing the Family 
Opportunity Act of 2000. Our goal is to help children with disabilities 
by removing the health care barriers 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 children 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% of children in this country have significant 
disabilities. Yet many of them do not have access to the health 
services they need to maintain and prevent deterioration of their 
health. Too often, to obtain needed health services for their children 
under Medicaid, families are forced to become poor, stay poor, put 
their children in institutions, or give up custody of their children 
entirely. No parent should be faced with that unacceptable choice.
  In a recent survey of 20 states, 64% 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 children can stay eligible for 
Medicaid through SSI, the Social Security Income Program.
  Today we are introducing legislation to close the health care gap for 
vulnerable families, and enable them to obtain the health care their 
disabled children deserve.
  The Family Opportunity Act of 2000 will remove the unfair barriers 
that deny needed health care to so many disabled children and special 
needs children.
  It will make health insurance coverage more widely available for 
children with significant current disabilities, by enabling parents to 
buy-in to Medicaid at an affordable rate.
  It will enable states to develop a demonstration program to provide a 
Medicaid buy-in for children with potentially significant 
disabilities--those who will become severely disabled if they do not 
receive health services.
  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 last year 
demonstrated the nation's commitment to help adults with disabilities 
obtain the health services they need, in order to lead independent and 
productive lives. The legislation we are introducing today makes a 
similar commitment to children with disabilities and their families.
  I look forward to working with all members of Congress to enact this 
legislation. Disabled children and their families across the country 
deserve this help in achieving their dreams and participating fully in 
the social and economic mainstream of our nation.
  Mr. JEFFORDS. Mr. President, I am very pleased to join my colleagues, 
Senators Grassley, Kennedy and Harkin in introducing the Family 
Opportunity Act of 2000. We are taking the right step, the logical 
step, and a much needed step.
  The last bill signed into law in the 20th Century was the Work 
Incentives Improvement Act. Through it, we extended health care 
coverage to adults with disabilities who work, by allowing them to buy-
in to Medicaid coverage regardless of their income. Tomorrow, we set 
out to help children with disabilities by introducing the Family 
Opportunity Act. This legislation will create a similar Medicaid buy-in 
option for families of children with disabilities.
  When a child is born, it is a time for joy, hope, and dreams. If the 
child has a serious medical condition that may lead to a significant 
disability, or if the child is born with a disability, these feelings 
are often put on hold. Instead, the families of these children must 
concentrate on some basic facts, facts that may be a matter of life and 
death. These facts will shape the quality of life that the family can 
offer the child. The family will have to answer some important 
questions. First, do they have health insurance? If so, does the 
insurance cover the cost of the specialized services that their child 
needs? Families who answer `NO' to these questions are overwhelmed and 
fearful, and their vision of the future is filled with uncertainty.
  Every day, children in America are born with severe disabilities that 
require specialized health care services. Too often, the parents of 
these children do not have health care coverage or their coverage does 
not cover the needed services. These families do not have many options. 
Their child can receive health care coverage only if the family is 
poor, or if the family gives the child up to the state. We have all 
heard heart wrenching stories, but none are more traumatic than these.
  The Family Opportunity Act of 2000 is a solution to this tragic 
problem. Children without health insurance will now be covered. Those 
children with

[[Page S1608]]

disabilities whose health insurance does not cover the services they 
need, will also be covered. Children with significant disabilities will 
no longer be denied the health care coverage they need, regardless of 
their family's income. Their families will, however, be expected to 
contribute to the cost of coverage. In addition, these families will 
have access to assistance from a Family Health Information Center. This 
service will provide families with information about their options and 
will help them exercise these options. Their children will receive the 
care they need and deserve.
  Data from the Social Security Administration indicates that in 
December 1999 there were 1,080 Vermont children with disabilities 
eligible for Medicaid. That means that the families of these children 
are poor. Some of these families have chosen to keep their income under 
the prescribed limits in law, so that they can access health care 
through Medicaid for their child with a disability. These families 
cannot access health care coverage for their children through the 
private sector.
  With the Family Opportunity Act everyone wins. Through Medicaid, 
children with disabilities will receive the health care services they 
desperately need. Through the Family Health Information Centers, their 
families will be provided with the right information at the right time. 
Families will be able to make key medical decisions that will maximize 
the quality of life for their children with disabilities. And, the 
federal and state governments will have a cost-effective program to 
help children and families in need.
  The Family Opportunity Act of 2000 will make time for joy, hope, and 
dreams, for families of children with special needs. This is a good 
start to the 21st Century.
  Mr. HARKIN. Mr. President, today, I rise in support of the Family 
Opportunity Act of 2000. I commend my colleague from Iowa, Senator 
Grassley, for his work on this important piece of legislation. I also 
thank Senator Kennedy for his continued leadership on these issues. 
This bill would help many children across the country get the services 
they need to grow up and become independent and productive members of 
society. And, it will help their families stay afloat financially.
  I am always encouraged when issues affecting individuals with 
disabilities and their families rise above partisan lines. Disability 
is not a partisan issue. President Bush understood that. Bob Dole 
understands that. And I am glad to see that my fellow senator from Iowa 
has joined me in the fight to ensure that children with disabilities 
and their families get a fair shake in life.
  Just last year the Congress and the President agreed that we should 
remove barriers to work for people with disabilities in our national 
programs when it passed the Ticket to Work and Work Incentives 
Improvement Act of 1999 into law. The Family Opportunity Act builds on 
that bipartisan agreement and says that we should also remove barriers 
to work for families of children with disabilities. Right now, many 
families are forced to spend down their savings and earnings on 
specialized services for their children because their private insurance 
won't cover them. Other families give up jobs and promotions so that 
they continue to qualify for Medicaid.
  This is wrong for two reasons. First, it's the child that suffers if 
appropriate services aren't available due to high cost and lack of 
insurance coverage. Second, if a family is forced to pay for expensive 
services time and again or forced to give up an employment opportunity, 
the entire family is pushed to edge financially. As a result, the 
family can become impoverished or forced to give up custody of their 
child in order to secure appropriate Medicaid services.
  This bill provides a commonsense solution to the problem. The bill 
allows States to offer Medicaid coverage to children with severe 
disabilities living in middle-income families through a buy-in program. 
children will get the right early intervention services, rehabilitation 
and long-term therapies, and medical equipment they need to keep pace 
and grow into adulthood. And, parents will no longer have to sacrifice 
a job, a raise, or overtime so they can stay inside the income bracket 
that qualifies their child for SSI/Medicaid.
  Perhaps most importantly, this bill will ensure that children get the 
services they need to stay at home with their families. Keeping 
families strong is the best therapy for everyone--the child, the 
family, and the entire community.
  Finally, the Family to Family Health Information Centers included in 
the bill will ensure every family knows what about the services and 
opportunities that are available to them. I know this type of 
information exchange works because I've taken the lead to fund similar 
programs in the Labor-HHS appropriations bill.
  Ten years ago, as the chief sponsor of the Americans with 
Disabilities Act, I said on the Senate floor that I wanted every child 
and individual with a disability to have an equal opportunity to 
participate in all aspects of American life.
  Since that time, I have worked hard to ensure that every national 
program encourages independence and self-sufficiency for individuals 
with disabilities. Each step we take to live up to the promise of the 
Americans with Disabilities' Act is progress. Last year's Ticket to 
Work and Work Incentives Improvement was a big step toward equality. 
The Family Opportunity Act builds on that legislation.
  In my mind, the Medicaid Community Attendant Services Act (MiCASSA), 
introduced by myself and Senator Specter last fall, takes the next big 
step toward fulfilling the promise of the ADA. Given a real choice, 
most Americans who need long-term services and supports would prefer to 
receive them in home and community settings rather than in 
institutions. And yet, too often decisions relating to the provision of 
long-term services and supports are influenced by what is reimbursable 
under Federal and State Medicaid policy rather than by what individuals 
need. Research has revealed a significant bias in the Medicaid program 
toward reimbursing services provided in institutions over services 
provided in home and community settings (75 percent of Medicaid funds 
pay for services provided in institutions).
  Long-term services and supports provided under the Medicaid program 
must meet the evolving and changing needs and preferences of 
individuals. No individual should be forced into an institution to 
receive reimbursement for services that can be effectively and 
efficiently delivered in the home or community. Individuals must be 
empowered to exercise and real choice in selecting long term services 
and supports that meet their unique needs. Federal and State Medicaid 
policies should facilitate and be responsive to and not impede an 
individual's choice in selecting needed long-term services and 
supports.
  MiCASSA would eliminate the bias in Medicaid law toward institutional 
care by providing that stats offer community attendant services and 
supports as well as institutional care for eligible individuals in need 
of long term services and supports. The legislation also assists states 
develop and enhance comprehensive statewide system of long-term 
services and supports that provide real consumer choice consistent with 
the principle that service and supports should be provided in the most 
integrated setting appropriate to meeting the unique need of the 
individual.
  I look forward to building further bipartisan agreement on both 
pieces of legislation. This is an exciting time for disability policy.
                                 ______