[Congressional Record Volume 149, Number 41 (Thursday, March 13, 2003)]
[Senate]
[Pages S3740-S3742]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. GRASSLEY (for himself, Mr. Kennedy, Mr. Baucus, Ms. Snowe, 
        Mr. Daschle, Mr. Smith, Mr. Kerry, Mr. Thomas, Mr. Bingaman, 
        Mr. Bunning, Mr. Rockefeller, Mrs. Lincoln, Mr.  Jeffords, Mr. 
        Enzi, Mr. Sarbanes, Mr. Domenici, Mr. Johnson, Mr. Ensign, Mrs. 
        Murray, Mr. Hollings, Ms. Stabenow, Mr. Corzine, Mr. Bennett, 
        Mr. Schumer, Mr. Warner, Mr. Reid, Mr. DeWine, Mr. Reed, Ms. 
        Collins, Mr. Miller, Mr. Lugar, Mr. Lieberman, Mr. Leahy, Mr. 
        Chafee, Mr. Kohl, Mr. Graham of South Carolina, Mr. Edwards, 
        Mr. McCain, Mr. Dorgan, Mr. Roberts, Mr. Dodd, Mr. Dayton, Ms. 
        Cantwell, Mr. Breaux, Mr. Biden, Ms. Mikulski, Mr. Levin, Ms. 
        Landrieu, Mr. Inouye, Mr. Harkin, Mr. Durbin, Mrs. Clinton, 
        Mrs. Boxer, Mr. Bayh, and Mr. Akaka):
  S. 622. 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, Senator Kennedy and I are happy to 
announce the introduction of the Family Opportunity Act of 2003, a bill 
to promote family, work, and opportunity. Every day, across the 
country, thousands of families struggle to obtain affordable and 
appropriate health care coverage for children with special health care 
needs, including children with conditions such as autism, mental 
retardation, cerebral palsy, developmental delays, or mental illness.
  Low and middle income parents who have employer sponsored family 
health care coverage often find that their private insurance doesn't 
adequately cover the array of services that are critical to their 
child's well-being, such as mental health services, personal care 
services, durable medical equipment, special nutritional supplements, 
and respite care. Because Medicaid, our nation's health care program 
for low-income individuals, offers the type of comprehensive care that 
best meets the needs of children with disabilities, it can become a 
lifeline on which many parents depend.
  Yet, Medicaid is a safety net program and one must be impoverished in 
order to be eligible. This presents a terrible choice for many low and 
middle income families who have a child with special health care needs: 
they must choose between work or impoverishment. Or, in the worst 
cases, parents consider the devastating choice of relinquishing custody 
for an out-of-home placement so their child can obtain services they so 
desperately need. Truly, there is nothing more heartbreaking for a 
parent than to be unable to provide for a child in need.
  Consider the following example: Mr. and Mrs. Jones have two 
daughters, Heather and Hannah. Hannah was born with cerebral palsy. The 
family earns $29,000 a year and is insured through employer sponsored 
health insurance. Mr. Jones recently lost his job because of down-
sizing. Last year, even with insurance, the family spent nearly $9,000 
on out-of-pocket medical expenses. Mr. Jones has found a new job; 
unfortunately, the family's insurance premium has risen to $200 a month 
and does not cover essential occupational and physical therapy. The 
family dipped into their 401K when Hannah was born. The family's 
earnings minus the health care premiums, minus out of pocket expenses 
puts this family at an annual income of $17,600. The federal poverty 
level for a family of four is $18,400. This hard-working family is 
being impoverished because of their commitment to care for their 
disabled child.
  Over the past three years, I have worked with Senator Kennedy and 
Representative Pete Sessions to advance this important legislation on 
behalf of thousands of families who need our help. Each year, more than 
70 Senators have signed on as co-sponsors of the legislation. I 
understand the many pressing challenges facing our nation's health care 
system, but I urge the Senate to show its support for helping these 
families and pass the Family Opportunity Act this year.
  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. 622

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

     SECTION 1. SHORT TITLE; AMENDMENTS TO SOCIAL SECURITY ACT; 
                   TABLE OF CONTENTS.

       (a) Short Title.--This Act may be cited as the ``Family 
     Opportunity Act of 2003'' or the ``Dylan Lee James Act''.
       (b) Amendments to Social Security Act.--Except as otherwise 
     specifically provided, whenever in this Act an amendment is 
     expressed in terms of an amendment to or repeal of a section 
     or other provision, the reference shall be considered to be 
     made to that section or other provision of the Social 
     Security Act.
       (c) Table of Contents.--The table of contents of this Act 
     is as follows:

Sec. 1. Short title; amendments to Social Security Act; table of 
              contents.
Sec. 2. Opportunity for families of disabled children to purchase 
              medicaid coverage for such children.
Sec. 3. Treatment of inpatient psychiatric hospital services for 
              individuals under age 21 in home or community-based 
              services waivers.
Sec. 4. Development and support of family-to-family health information 
              centers.
Sec. 5. Restoration of medicaid eligibility for certain SSI 
              beneficiaries.

     SEC. 2. OPPORTUNITY FOR FAMILIES OF DISABLED CHILDREN TO 
                   PURCHASE MEDICAID COVERAGE FOR SUCH CHILDREN.

       (a) State Option To Allow Families of Disabled Children To 
     Purchase Medicaid Coverage for Such Children.--
       (1) In general.--Section 1902 (42 U.S.C. 1396a) is 
     amended--
       (A) in subsection (a)(10)(A)(ii)--
       (i) by striking ``or'' at the end of subclause (XVII);
       (ii) by adding ``or'' at the end of subclause (XVIII); and
       (iii) by adding at the end the following new subclause:

       ``(XIX) who are disabled children described in subsection 
     (cc)(1);''; and

       (B) by adding at the end the following new subsection:
       ``(cc)(1) Individuals described in this paragraph are 
     individuals--
       ``(A) who have not attained 18 years of age;
       ``(B) who would be considered disabled under section 
     1614(a)(3)(C) but for having earnings or deemed income or 
     resources (as determined under title XVI for children) that 
     exceed the requirements for receipt of supplemental security 
     income benefits; and
       ``(C) whose family income does not exceed such income level 
     as the State establishes and does not exceed--
       ``(i) 250 percent of the income official poverty line (as 
     defined by the Office of Management and Budget, and revised 
     annually in accordance with section 673(2) of the Omnibus 
     Budget Reconciliation Act of 1981) applicable to a family of 
     the size involved; or
       ``(ii) such higher percent of such poverty line as a State 
     may establish, except that--
       ``(I) any medical assistance provided to an individual 
     whose family income exceeds 250 percent of such poverty line 
     may only be provided with State funds; and
       ``(II) no Federal financial participation shall be provided 
     under section 1903(a) for any medical assistance provided to 
     such an individual.''.
       (2) Interaction with employer-sponsored family coverage.--
     Section 1902(cc) (42 U.S.C. 1396a(cc)), as added by paragraph 
     (1)(B), is amended by adding at the end the following new 
     paragraph:
       ``(2)(A) If an employer of a parent of an individual 
     described in paragraph (1) offers family coverage under a 
     group health plan (as defined in section 2791(a) of the 
     Public Health Service Act), the State shall--
       ``(i) require such parent to apply for, enroll in, and pay 
     premiums for, such coverage as a condition of such parent's 
     child being or remaining eligible for medical assistance 
     under subsection (a)(10)(A)(ii)(XIX) if the parent is 
     determined eligible for such coverage and the employer 
     contributes at least 50 percent of the total cost of annual 
     premiums for such coverage; and
       ``(ii) if such coverage is obtained--
       ``(I) subject to paragraph (2) of section 1916(h), reduce 
     the premium imposed by the State under that section in an 
     amount that reasonably reflects the premium contribution made 
     by the parent for private coverage on behalf of a child with 
     a disability; and
       ``(II) treat such coverage as a third party liability under 
     subsection (a)(25).
       ``(B) In the case of a parent to which subparagraph (A) 
     applies, a State, subject to paragraph (1)(C)(ii), may 
     provide for payment of any portion of the annual premium

[[Page S3741]]

     for such family coverage that the parent is required to pay. 
     Any payments made by the State under this subparagraph shall 
     be considered, for purposes of section 1903(a), to be 
     payments for medical assistance.''.
       (b) State Option To Impose Income-Related Premiums.--
     Section 1916 (42 U.S.C. 1396o) is amended--
       (1) in subsection (a), by striking ``subsection (g)'' and 
     inserting ``subsections (g) and (h)''; and
       (2) by adding at the end the following new subsection:
       ``(h)(1) With respect to disabled children provided medical 
     assistance under section 1902(a)(10)(A)(ii)(XIX), subject to 
     paragraph (2), a State may (in a uniform manner for such 
     children) require the families of such children to pay 
     monthly premiums set on a sliding scale based on family 
     income.
       ``(2) A premium requirement imposed under paragraph (1) may 
     only apply to the extent that--
       ``(A) the aggregate amount of such premium and any premium 
     that the parent is required to pay for family coverage under 
     section 1902(cc)(2)(A)(i) does not exceed 5 percent of the 
     family's income; and
       ``(B) the requirement is imposed consistent with section 
     1902(cc)(2)(A)(ii)(I).
       ``(3) A State shall not require prepayment of a premium 
     imposed pursuant to paragraph (1) and shall not terminate 
     eligibility of a child under section 1902(a)(10)(A)(ii)(XIX) 
     for medical assistance under this title on the basis of 
     failure to pay any such premium until such failure continues 
     for a period of not less than 60 days from the date on which 
     the premium became past due. The State may waive payment of 
     any such premium in any case where the State determines that 
     requiring such payment would create an undue hardship.''.
       (c) Conforming Amendments.--Section 1903(f)(4) (42 U.S.C. 
     1396b(f)(4)) is amended in the matter preceding subparagraph 
     (A), by inserting ``1902(a)(10)(A)(ii)(XIX),'' after 
     ``1902(a)(10)(A)(ii)(XVIII),''.
       (d) Effective Date.--The amendments made by this section 
     shall apply to medical assistance for items and services 
     furnished on or after October 1, 2005.

     SEC. 3. TREATMENT OF INPATIENT PSYCHIATRIC HOSPITAL SERVICES 
                   FOR INDIVIDUALS UNDER AGE 21 IN HOME OR 
                   COMMUNITY-BASED SERVICES WAIVERS.

       (a) In General.--Section 1915(c) (42 U.S.C. 1396n(c)) is 
     amended--
       (1) in paragraph (1)--
       (A) in the first sentence, by inserting ``, or would 
     require inpatient psychiatric hospital services for 
     individuals under age 21,'' after ``intermediate care 
     facility for the mentally retarded''; and
       (B) in the second sentence, by inserting ``, or would 
     require inpatient psychiatric hospital services for 
     individuals under age 21'' before the period;
       (2) in paragraph (2)(B), by striking ``or services in an 
     intermediate care facility for the mentally retarded'' each 
     place it appears and inserting ``services in an intermediate 
     care facility for the mentally retarded, or inpatient 
     psychiatric hospital services for individuals under age 21'';
       (3) in paragraph (2)(C)--
       (A) by inserting ``, or who are determined to be likely to 
     require inpatient psychiatric hospital services for 
     individuals under age 21,'' after ``, or intermediate care 
     facility for the mentally retarded''; and
       (B) by striking ``or services in an intermediate care 
     facility for the mentally retarded'' and inserting ``services 
     in an intermediate care facility for the mentally retarded, 
     or inpatient psychiatric hospital services for individuals 
     under age 21''; and
       (4) in paragraph (7)(A)--
       (A) by inserting ``or would require inpatient psychiatric 
     hospital services for individuals under age 21,'' after 
     ``intermediate care facility for the mentally retarded,''; 
     and
       (B) by inserting ``or who would require inpatient 
     psychiatric hospital services for individuals under age 21'' 
     before the period.
       (b) Effective Date.--The amendments made by subsection (a) 
     apply with respect to medical assistance provided on or after 
     January 1, 2004.

     SEC. 4. DEVELOPMENT AND SUPPORT OF FAMILY-TO-FAMILY HEALTH 
                   INFORMATION CENTERS.

       Section 501 (42 U.S.C. 701) is amended by adding at the end 
     the following new subsection:
       ``(c)(1)(A) For the purpose of enabling the Secretary 
     (through grants, contracts, or otherwise) to provide for 
     special projects of regional and national significance for 
     the development and support of family-to-family health 
     information centers described in paragraph (2)--
       ``(i) there is appropriated to the Secretary, out of any 
     money in the Treasury not otherwise appropriated--
       ``(I) $3,000,000 for fiscal year 2004;
       ``(II) $4,000,000 for fiscal year 2005; and
       ``(III) $5,000,000 for fiscal year 2006; and
       ``(ii) there is authorized to be appropriated to the 
     Secretary, $5,000,000 for each of fiscal years 2007 and 2008.
       ``(B) Funds appropriated or authorized to be appropriated 
     under subparagraph (A) shall--
       ``(i) be in addition to amounts appropriated under 
     subsection (a) and retained under section 502(a)(1) for the 
     purpose of carrying out activities described in subsection 
     (a)(2); and
       ``(ii) remain available until expended.
       ``(2) The family-to-family health information centers 
     described in this paragraph are centers that--
       ``(A) assist families of children with disabilities or 
     special health care needs to make informed choices about 
     health care in order to promote good treatment decisions, 
     cost-effectiveness, and improved health outcomes for such 
     children;
       ``(B) provide information regarding the health care needs 
     of, and resources available for, children with disabilities 
     or special health care needs;
       ``(C) identify successful health delivery models for such 
     children;
       ``(D) develop with representatives of health care 
     providers, managed care organizations, health care 
     purchasers, and appropriate State agencies a model for 
     collaboration between families of such children and health 
     professionals;
       ``(E) provide training and guidance regarding caring for 
     such children;
       ``(F) conduct outreach activities to the families of such 
     children, health professionals, schools, and other 
     appropriate entities and individuals; and
       ``(G) are staffed by families of children with disabilities 
     or special health care needs who have expertise in Federal 
     and State public and private health care systems and health 
     professionals.
       ``(3) The Secretary shall develop family-to-family health 
     information centers described in paragraph (2) under this 
     subsection in accordance with the following:
       ``(A) With respect to fiscal year 2004, such centers shall 
     be developed in not less than 25 States.
       ``(B) With respect to fiscal year 2005, such centers shall 
     be developed in not less than 40 States.
       ``(C) With respect to fiscal year 2006, such centers shall 
     be developed in not less than 50 States and the District of 
     Columbia.
       ``(4) The provisions of this title that are applicable to 
     the funds made available to the Secretary under section 
     502(a)(1) apply in the same manner to funds made available to 
     the Secretary under paragraph (1)(A).
       ``(5) For purposes of this subsection, the term `State' 
     means each of the 50 States and the District of Columbia.''.

     SEC. 5. RESTORATION OF MEDICAID ELIGIBILITY FOR CERTAIN SSI 
                   BENEFICIARIES.

       (a) In General.--Section 1902(a)(10)(A)(i)(II) (42 U.S.C. 
     1396a(a)(10)(A)(i)(II)) is amended--
       (1) by inserting ``(aa)'' after ``(II)'';
       (2) by striking ``) and'' and inserting ``and'';
       (3) by striking ``section or who are'' and inserting 
     ``section), (bb) who are''; and
       (4) by inserting before the comma at the end the following: 
     ``, or (cc) who are under 21 years of age and with respect to 
     whom supplemental security income benefits would be paid 
     under title XVI if subparagraphs (A) and (B) of section 
     1611(c)(7) were applied without regard to the phrase `the 
     first day of the month following' ''.
       (b) Effective Date.--The amendments made by subsection (a) 
     shall apply to medical assistance for items and services 
     furnished on or after the first day of the first calendar 
     quarter that begins after the date of enactment of this Act.
                                  ____

  Mr. KENNEDY. Mr. President, it is an honor to join my colleague 
Senator Grassley today in re-introducing the Family Opportunity Act 
of--so that once and for all, we can remove the health care barriers 
for children with disabilities that so often prevent families from 
staying together and staying employed, and that so often prevent their 
children from growing up to live independent lives and become fully 
contributing members of their communities.
  More than 9 percent of children in this country have significant 
disabilities, many of whom do not have access to the basic health 
services they need to maintain their health status, let alone prevent 
its continuing deterioration. To obtain theses health services for 
their children, families are being forced to become poor, stay poor, 
put their children in institutions or ever give up custody of their 
children--all so that their children can qualify for the 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 unable even to save money for the future of their 
children and family--all so that their child can stay eligible for 
Medicaid through the Social Security Income Program. The lack of 
adequate health care in our country today continues to force these 
families into poverty in order to obtain the care they need for their 
disabled children.
  The legislation we are reintroducing will close the health care gap 
for the nation's most vulnerable population, and enable families of 
disabled children to be equal partners in the American dream.
  In the words of President George Bush in his ``New Freedom 
Initiative,'' ``To many Americans with disabilities remain trapped in 
bureaucracies of dependence, and are denied the access

[[Page S3742]]

necessary for success--and we need to tear down these barriers.
  The Family Opportunity. Act will do just that. It will tear down the 
unfair barriers to needed health care that so many disabled and special 
needs children are 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. States will 
have greater flexibility to enable children with metal health 
disabilities to obtain the health services they need in order to live 
at home and in their communities. It will establish Family to Family 
Information Centers in each state to assist families with special needs 
children.
  The passage of Work Incentives Improvement Act in 1999 demonstrated 
the nation's commitment to give adults with disabilities the right to 
lead independent and productive lives without giving up their health 
care. It is time for Congress to show the same commitment to children 
with disabilities.
  We came very close to passing the Family Opportunity Act in the last 
Congress. I look forward to working members of this new Congress to 
enact this important legislation, and give disabled children and their 
families their rightful opportunity to fulfill their dreams and 
participate fully in the life of our nation.
                                 ______