[Congressional Record (Bound Edition), Volume 150 (2004), Part 7]
[Senate]
[Pages 8640-8645]
[From the U.S. Government Publishing Office, www.gpo.gov]




                     FAMILY OPPORTUNITY ACT OF 2003

  Mr. GRASSLEY. Mr. President, I ask unanimous consent the Senate 
proceed to the immediate consideration of Calendar No. 295, S. 622.
  The PRESIDING OFFICER. The clerk will report the bill by title.
  The legislative clerk read as follows:

       A bill (S. 622) 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.

  There being no objection, the Senate proceeded to consider the bill, 
which had been reported from the Committee on Finance, with an 
amendment to strike all after the enacting clause and insert in lieu 
thereof the following:
  (Strike the part shown in black brackets and insert the part shown in 
italic.)

                                 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.

[[Page 8641]]



     [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 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.

[[Page 8642]]

       [``(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.]

     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 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 Amendment.--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 
     October 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--

[[Page 8643]]

       ``(I) $3,000,000 for fiscal year 2005;
       ``(II) $4,000,000 for fiscal year 2006; and
       ``(III) $5,000,000 for fiscal year 2007; and
       ``(ii) there is authorized to be appropriated to the 
     Secretary, $5,000,000 for each of fiscal years 2008 and 2009.
       ``(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) 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 all States.
       ``(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 October 1, 2004.

  Mr. GRASSLEY. Mr. President, today, I come to the floor to talk about 
a bill of great significance to me. The Family Opportunity Act is a 
bill that I first introduced with Senator Kennedy in the 106th 
Congress.
  This bill promotes 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. 
Over the course of the last three Congresses, this bill has enjoyed 
strong bipartisan support.
  Low and middle income parents who have employer sponsored family 
health care coverage and children with disabilities often find that 
their private insurance does not 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.
   The Family Opportunity Act helps families to address the needs of 
children with disabilities. Some Members of the Senate have voiced 
concerns over the years about the cost of this bill and the expansion 
of the Medicaid program. Senator Nickles and I have had many long 
discussions about the goals of this legislation. I greatly respect his 
position and I appreciate the thoughtful and productive debate that I 
have been able to have with him. This bill would never have gotten to 
this point without his help and I whole-heartedly thank him for his 
willingness to work through his concerns with me. The Family 
Opportunity Act will cover families up to 250 percent of the Federal 
poverty level. This is less than coverage up to 600 percent of the 
Federal poverty level in my original bill. Senator Nickles and I have 
worked over the years to reach this compromise.
   At Senator Nickles' request, language has been added to this bill 
that clearly conveys the intention of Senator Kennedy and me that 
States who choose the FOA optional eligibility category will receive 
Medicaid match and not S-CHIP match for children covered under the 
Family Opportunity Act. The legislation before us allows States the 
option of having families eligible for FOA pay up to 7.5 percent of 
their income for their premium. These family contributions are 
affordable and help to insure that children with disabilities have the 
access that they need.
   Senator Nickles expressed to me another concern. While States will 
have the option to cover families above 250 percent of the Federal 
poverty level with 100 percent State dollars, States need to decide how 
they want to spend their dollars. They should also be aware that it is 
not the role of the Federal Government to help them when times are 
financially tough. Last May, the Congress provided States with $20 
billion in State fiscal relief. Ten billion went directly to Medicaid 
to address the rising costs in Medicaid. Over 60 percent of the 
spending in Medicaid is for optional services. The Family Opportunity 
Act is an optional service, and as much as I want States to take up 
this Medicaid option for children with disabilities, I want to let 
States know that they need to be responsible when expanding their 
Medicaid programs in good and bad budget times.
   Senator Nickles and I have reached a good and fair compromise and I 
thank him for traveling this long road with me. As he can tell you, the 
Family Opportunity Act is one of my highest priorities. Over the past 4 
years, I have worked closely with Senator Kennedy and Representative 
Pete Sessions to advance this important legislation on behalf of 
thousands of families who need our help. I thank them both for their 
efforts along with the thousands of children and families who have been 
tireless advocates for this legislation.
  Mr. KENNEDY. Mr. President, it is an honor to join my colleague 
Senator Grassley today in completing Senate passage of the Family 
Opportunity Act--so that once and for all, we can remove the barriers 
to quality and affordable health care for children with disabilities. 
Barriers that prevent families from staying together and staying 
employed. And prevent their children from growing up to live 
independent lives and become fully contributing members of their 
communities.
  Many parents and leaders in communities throughout the country have 
worked long and hard and well to help us reach this milestone. They are 
parents, family members, citizens, and advocates. They are our friends, 
neighbors and colleagues. They showed us how we are failing families 
with severely disabled children by not giving them access to the health 
care they need to stay home and live in their community and compelled 
us to act. We have worked together for four long years to develop this 
legislation and to all of them I say, thank you for helping us to move 
this necessary legislation

[[Page 8644]]

forward. You have been fearless and tireless warriors for justice.
  When we think of disabled children we tend to think of children who 
are disabled from birth. But fewer than 10 percent of all children with 
disabilities are born with their disabilities. A bicycle accident or a 
serious fall or a serious illness can suddenly disable the healthiest 
child. Currently, more than 9 percent of children in this country have 
significant disabilities. Many do not have access to even the most 
basic health services they need to maintain their health status because 
their families cannot afford to pay for them. To obtain vital health 
services for their children, families are being forced to become poor, 
stay poor, or to do the unthinkable--put their children in institutions 
or even give up custody of their children--all so their children can 
qualify for the health coverage available under Medicaid.
  In a survey of 20 States, families of special needs children reported 
they have turned down jobs, turned down raises, and turned down 
overtime--all so 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 bill we are considering today may be the most important 
legislation we pass this Congress. It 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. It will 
tear down artificial barriers to success which have stood for far too 
long. This bill will change lives.
  This bill will change the life of 13-year-old Alice in Oklahoma, who 
was disabled because of multiple dystrophy. Under this bill she will 
now be able to get personal assistance to live at home with her family 
and go to her neighborhood school.
  This bill will change the life of Johnny in Indiana, who has severe 
mental illness and needs multiple mental health therapies and drugs. 
His mother will no longer be forced to give up custody of Johnny in 
order to secure the treatment he needs. Her goals of staying a 
productive citizen and keeping her son at home will no longer be 
denied--because her son will have access to the health care and 
supports he needs.
  This bill will change the life of Abby in Massachusetts, who is 6 
years old and has mental retardation. Her parents are very concerned 
about her future. Already, she has been denied coverage by two health 
insurance firms because of the diagnosis of mental retardation. Without 
Medicaid, her parents would be bankrupted by her current medical bills. 
Now Abby and her family will have a fair opportunity to work and 
prosper.
  The Family Opportunity Act will make health insurance coverage more 
widely available for children with significant disabilities, by giving 
families opportunities to buy health care coverage through Medicaid. It 
will provide States with greater flexibility to enable children with 
mental 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 
in meeting the unique health care needs of their disabled children.
  The passage of the Work Incentives Improvement Act in 1999 
demonstrated our commitment to give adults with disabilities the right 
to lead independent and productive lives, without giving up their 
health care. It's time for Congress to show the same commitment to 
children with disabilities and pass the Family Opportunity Act.
  These families aren't looking for a hand out--just a helping hand. 
Today, the Senate will move one step closer to providing it to them.
  Mr. GRASSLEY. Mr. President, I ask unanimous consent the substitute 
amendment at the desk be agreed to, the committee-reported substitute 
as amended be agreed to, the bill as amended be read a third time and 
passed, the motions to reconsider be laid upon the table en bloc, and 
that any statements be printed in the Record.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The amendment (No. 3119) was agreed to, as follows:

       In lieu of the matter proposed to be inserted, insert the 
     following:

     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 2004'' 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 poverty line (as defined in 
     section 2110(c)(5)) 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 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

[[Page 8645]]

     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) in the case of a disabled child described in that 
     paragraph whose family income does not exceed 250 percent of 
     the poverty line, 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 7.5 
     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 Amendment.--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) Rule of Construction.--Notwithstanding any other 
     provision of law, nothing in the amendments made by this 
     section shall be construed as permitting the application of 
     the enhanced FMAP (as defined in section 2105(b) of the 
     Social Security Act (42 U.S.C. 1397ee(b)) to expenditures 
     that are attributable to disabled children provided medical 
     assistance under section 1902(a)(10)(A)(ii)(XIX) of such Act 
     (42 U.S.C. 1396a(a)(10)(A)(ii)(XIX)) (as added by subsection 
     (a) of this section).
       (e) Effective Date.--The amendments made by this section 
     shall apply to medical assistance for items and services 
     furnished on or after October 1, 2006.

     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 
     October 1, 2006.

     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 2006;
       ``(II) $4,000,000 for fiscal year 2007; and
       ``(III) $5,000,000 for fiscal year 2008; and
       ``(ii) there is authorized to be appropriated to the 
     Secretary, $5,000,000 for each of fiscal years 2009 and 2010.
       ``(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) in accordance 
     with the following:
       ``(A) With respect to fiscal year 2006, such centers shall 
     be developed in not less than 25 States.
       ``(B) With respect to fiscal year 2007, such centers shall 
     be developed in not less than 40 States.
       ``(C) With respect to fiscal year 2008, such centers shall 
     be developed in all States.
       ``(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 January 1, 2006.

  The committee amendment in the nature of a substitute, as amended, 
was agreed to.
  The bill was ordered to be engrossed for a third reading, was read 
the third time and passed.

                          ____________________