I 

109TH CONGRESS 

1ST SESSION H. R. 1443 

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. 

IN THE HOUSE OF REPRESENTATIVES 

MARCH 17, 2005 

Mr. SESSIONS (for himself, Mr. WAXMAN, Mr. TERRY, Mr. DINGELL, Mr. 

MCHUGH, Mr. MCNULTY, Mr. ABERCROMBIE, Mr. BROWN of Ohio, Mr. 

VAN HOLLEN, Mr. FORD, Mr. KIND, Mr. LANGEVIN, Mr. TOWNS, Mr. 

ROSS, Mrs. CHRISTENSEN, Mrs. CAPPS, Mr. GRIJALVA, Mr. PALLONE, 

Mr. PAUL, Mr. MORAN of Virginia, Ms. LEE, Mr. LANTOS, Mr. 

DOGGETT, Mr. SCHIFF, Mr. ALLEN, Mr. DAVIS of Florida, Ms. 

SCHAKOWSKY, Mr. STRICKLAND, Mr. GORDON, Mr. ENGEL, Mr. HINCHEY, Mr. COOPER, Ms. BALDWIN, and Mr. MCDERMOTT) introduced the 

following bill; which was referred to the Committee on Energy and Commerce 

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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 
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1 SECTION 1. SHORT TITLE. 

2 This Act may be cited as the ‘‘Family Opportunity 

3 Act of 2005’’or the ‘‘Dylan Lee James Act’’. 

4 SEC. 2. REFERENCES; TABLE OF CONTENTS. 

5 (a) AMENDMENTS TO SOCIAL SECURITY ACT.—Ex6 cept as otherwise specifically provided, whenever in this 

7 title an amendment is expressed in terms of an amend8 ment to or repeal of a section or other provision, the ref9 erence shall be considered to be made to that section or 

10 other provision of the Social Security Act. 

11 (b) TABLE OF CONTENTS.—The table of contents for 

12 this Act is as follows: 

Sec. 1. Short title. 

Sec. 2. References; table of contents. 

Sec. 3. Opportunity for families of disabled children to purchase medicaid coverage for such children. 

Sec. 4. Demonstration projects regarding home and community-based alternative to psychiatric residential treatment facilities for children. 

Sec. 5. Development and support of family-to-family health information centers. 

Sec. 6. Restoration of medicaid eligibility for certain SSI beneficiaries. 

13 SEC. 3. OPPORTUNITY FOR FAMILIES OF DISABLED CHIL14 DREN TO PURCHASE MEDICAID COVERAGE 

15 FOR SUCH CHILDREN. 

16 (a) STATE OPTION TO ALLOW FAMILIES OF DIS17 ABLED CHILDREN TO PURCHASE MEDICAID COVERAGE

18 FOR SUCH CHILDREN.— 

19 (1) IN GENERAL.—Section 1902 (42 U.S.C. 

20 1396a) is amended— 

21 (A) in subsection (a)(10)(A)(ii)— 
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1 (i) by striking ‘‘or’’ at the end of sub2 clause (XVII); 

3 (ii) by adding ‘‘or’’ at the end of sub4 clause (XVIII); and 

5 (iii) by adding at the end the fol6 lowing new subclause: 

7 ‘‘(XIX) who are disabled children 

8 described in subsection (cc)(1);’’; and 

9 (B) by adding at the end the following new 

10 subsection: 

11 ‘‘(cc)(1) Individuals described in this paragraph are 

12 individuals— 

13 ‘‘(A) who are children who have not attained 19 

14 years of age and are born— 

15 ‘‘(i) on or after October 1, 1999 (or, at the 

16 option of a State, on or after an earlier date), 

17 in the case of fiscal year 2006; 

18 ‘‘(ii) on or after October 1, 1994 (or, at 

19 the option of a State, on or after an earlier 

20 date), in the case of fiscal year 2007; and 

21 ‘‘(iii) after October 1, 1988, in the case of 

22 fiscal year 2008 and any fiscal year thereafter; 

23 ‘‘(B) who would be considered disabled under 

24 section 1614(a)(3)(C) but for having earnings or 

25 deemed income or resources (as determined under 
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1 title XVI for children) that exceed the requirements 

2 for receipt of supplemental security income benefits; 

3 and 

4 ‘‘(C) whose family income does not exceed such 

5 income level as the State establishes and does not 

6 exceed— 

7 ‘‘(i) 300 percent of the poverty line (as de8 fined in section 2110(c)(5)) applicable to a fam9 ily of the size involved; or 

10 ‘‘(ii) such higher percent of such poverty 

11 line as a State may establish, except that— 

12 ‘‘(I) any medical assistance provided 

13 to an individual whose family income ex14 ceeds 300 percent of such poverty line may 

15 only be provided with State funds; and 

16 ‘‘(II) no Federal financial participa17 tion shall be provided under section 

18 1903(a) for any medical assistance pro19 vided to such an individual.’’. 

20 (2) INTERACTION WITH EMPLOYER-SPONSORED

21 FAMILY COVERAGE.—Section 1902(cc) (42 U.S.C. 

22 1396a(cc)), as added by paragraph (1)(B), is 

23 amended by adding at the end the following new 

24 paragraph: 
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1 ‘‘(2)(A) If an employer of a parent of an individual 

2 described in paragraph (1) offers family coverage under 

3 a group health plan (as defined in section 2791(a) of the 

4 Public Health Service Act), the State shall— 

5 ‘‘(i) require such parent to apply for, enroll in, 

6 and pay premiums for such coverage as a condition 

7 of such parent’s child being or remaining eligible for 

8 medical assistance under subsection 

9 (a)(10)(A)(ii)(XIX) if the parent is determined eligi10 ble for such coverage and the employer contributes 

11 at least 50 percent of the total cost of annual pre12 miums for such coverage; and 

13 ‘‘(ii) if such coverage is obtained— 

14 ‘‘(I) subject to paragraph (2) of section 

15 1916(h), reduce the premium imposed by the 

16 State under that section in an amount that rea17 sonably reflects the premium contribution made 

18 by the parent for private coverage on behalf of 

19 a child with a disability; and 

20 ‘‘(II) treat such coverage as a third party 

21 liability under subsection (a)(25). 

22 ‘‘(B) In the case of a parent to which subparagraph 

23 (A) applies, a State, subject to paragraph (1)(A)(iii)(II), 

24 may provide for payment of any portion of the annual pre25 mium for such family coverage that the parent is required 
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1 to pay. Any payments made by the State under this sub2 paragraph shall be considered, for purposes of section 

3 1903(a), to be payments for medical assistance.’’. 

4 (b) STATE OPTION TO IMPOSE INCOME-RELATED

5 PREMIUMS.—Section 1916 (42 U.S.C. 1396o) is amend6 ed— 

7 (1) in subsection (a), by striking ‘‘subsection 

8 (g)’’ and inserting ‘‘subsections (g) and (h)’’; and 

9 (2) by adding at the end the following new sub10 section: 

11 ‘‘(h)(1) With respect to disabled children provided 

12 medical assistance under section 1902(a)(10)(A)(ii)(XIX), 

13 subject to paragraph (2), a State may (in a uniform man14 ner for such children) require the families of such children 

15 to pay monthly premiums set on a sliding scale based on 

16 family income. 

17 ‘‘(2) A premium requirement imposed under para18 graph (1) may only apply to the extent that— 

19 ‘‘(A) in the case of a disabled child described in 

20 that paragraph whose family income— 

21 ‘‘(i) does not exceed 200 percent of the 

22 poverty line, the aggregate amount of such pre23 mium and any premium that the parent is re24 quired to pay for family coverage under section 

25 1902(cc)(2)(A)(i) and other cost sharing 
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1 charges do not exceed 5 percent of the family’s 

2 income; and 

3 ‘‘(ii) exceeds 200, but does not exceed 300, 

4 percent of the poverty line, the aggregate 

5 amount of such premium and any premium that 

6 the parent is required to pay for family cov7 erage under section 1902(cc)(2)(A)(i) and other 

8 cost sharing charges do not exceed 7.5 percent 

9 of the family’s income; and 

10 ‘‘(B) the requirement is imposed consistent with 

11 section 1902(cc)(2)(A)(ii)(I). 

12 ‘‘(3) A State shall not require prepayment of a pre13 mium imposed pursuant to paragraph (1) and shall not 

14 terminate eligibility of a child under section 

15 1902(a)(10)(A)(ii)(XIX) for medical assistance under this 

16 title on the basis of failure to pay any such premium until 

17 such failure continues for a period of at least 60 days from 

18 the date on which the premium became past due. The 

19 State may waive payment of any such premium in any 

20 case where the State determines that requiring such pay21 ment would create an undue hardship.’’. 

22 (c) CONFORMING AMENDMENTS.—(1) Section 

23 1903(f)(4) (42 U.S.C. 1396b(f)(4)) is amended in the 

24 matter preceding subparagraph (A), by inserting 
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1 ‘‘1902(a)(10)(A)(ii)(XIX),’’ after 

2 ‘‘1902(a)(10)(A)(ii)(XVIII),’’. 

3 (2) Section 1905(u)(2)(B) (42 U.S.C. 

4 1396d(u)(2)(B)) is amended by adding at the end the fol5 lowing sentence: ‘‘Such term excludes any child eligible for 

6 medical assistance only by reason of section 

7 1902(a)(10)(A)(ii)(XIX).’’. 

8 (d) EFFECTIVE DATE.—The amendments made by 

9 this section shall apply to medical assistance for items and 

10 services furnished on or after October 1, 2005. 

11 SEC. 4. DEMONSTRATION PROJECTS REGARDING HOME 

12 AND COMMUNITY-BASED ALTERNATIVE TO 

13 PSYCHIATRIC RESIDENTIAL TREATMENT FA14 CILITIES FOR CHILDREN. 

15 (a) IN GENERAL.—The Secretary of Health and 

16 Human Services (in this section referred to as the ‘‘Sec17 retary’’) is authorized to conduct, during each of fiscal 

18 years 2006 through 2010, demonstration projects (each 

19 in the section referred to as a ‘‘demonstration project’’) 

20 in accordance with this section under which up to 10 

21 States (as defined for purposes of title XIX of the Social 

22 Security Act) are awarded grants, on a competitive basis, 

23 to test the effectiveness in improving or maintaining a 

24 child’s functional level and cost-effectiveness of providing 

25 coverage of home and community-based alternatives to 
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1 psychiatric residential treatment for children enrolled in 

2 the medicaid program under title XIX of such Act. 

3 (b) APPLICATION OF TERMS AND CONDITIONS.— 

4 (1) IN GENERAL.—Subject to the provisions of 

5 this section, for the purposes of the demonstration 

6 projects, and only with respect to children enrolled 

7 under such demonstration projects, a psychiatric res8 idential treatment facility (as defined in section 

9 483.352 of title 42 of the Code of Federal Regula10 tions) shall be deemed to be a facility specified in 

11 section 1915(c) of the Social Security Act (42 

12 U.S.C. 1396n(c)), and to be included in each ref13 erence in such section 1915(c) to hospitals, nursing 

14 facilities, and intermediate care facilities for the 

15 mentally retarded. 

16 (2) STATE OPTION TO ASSURE CONTINUITY OF

17 MEDICAID COVERAGE.—Upon the termination of a 

18 demonstration project under this section, the State 

19 that conducted the project may elect, only with re20 spect to a child who is enrolled in such project on 

21 the termination date, to continue to provide medical 

22 assistance for coverage of home and community23 based alternatives to psychiatric residential treat24 ment for the child in accordance with section 

25 1915(c) of the Social Security Act (42 U.S.C. 
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1 1396n(c)), as modified through the application of 

2 paragraph (1). Expenditures incurred for providing 

3 such medical assistance shall be treated as a home 

4 and community-based waiver program under section 

5 1915(c) of the Social Security Act (42 U.S.C. 

6 1396n(c)) for purposes of payment under section 

7 1903 of such Act (42 U.S.C. 1396b). 

8 (c) TERMS OF DEMONSTRATION PROJECTS.— 

9 (1) IN GENERAL.—Except as otherwise pro10 vided in this section, a demonstration project shall 

11 be subject to the same terms and conditions as apply 

12 to a waiver under section 1915(c) of the Social Se13 curity Act (42 U.S.C. 1396n(c)), including the waiv14 er of certain requirements under the first sentence 

15 of paragraph (3) of such section but not applying 

16 the second sentence of such paragraph. 

17 (2) BUDGET NEUTRALITY.—In conducting the 

18 demonstration projects under this section, the Sec19 retary shall ensure that the aggregate payments 

20 made by the Secretary under title XIX of the Social 

21 Security Act (42 U.S.C. 1396 et seq.) do not exceed 

22 the amount by which the Secretary estimates would 

23 have been paid under that title if the demonstration 

24 projects under this section had not been imple25 mented. 
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1 (3) EVALUATION.—The application for a dem2 onstration project shall include an undertaking to 

3 provide for such interim and final evaluations of the 

4 demonstration project by independent third parties, 

5 and for such interim and final reports to the Sec6 retary, as the Secretary may require. 

7 (d) PAYMENTS TO STATES; LIMITATIONS TO SCOPE

8 AND FUNDING.— 

9 (1) IN GENERAL.—Subject to paragraph (2), a 

10 demonstration project approved by the Secretary 

11 under this section shall be treated as a home and 

12 community-based waiver program under section 

13 1915(c) of the Social Security Act (42 U.S.C. 

14 1396n(c)) for purposes of payment under section 

15 1903 of such Act (42 U.S.C. 1396b). 

16 (2) LIMITATION.—In no case may the amount 

17 of payments made by the Secretary under this sec18 tion for State demonstration projects for a fiscal 

19 year exceed the amount available under subsection 

20 (f)(2)(A) for such fiscal year. 

21 (e) SECRETARY’S EVALUATION AND REPORT.—The 

22 Secretary shall conduct an interim and final evaluation of 

23 State demonstration projects under this section and shall 

24 report to the President and Congress the conclusions of 
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1 such evaluations within 12 months of completing such 

2 evaluations. 

3 (f) FUNDING.— 

4 (1) IN GENERAL.—For the purpose of carrying 

5 out this section, there are appropriated, from 

6 amounts in the Treasury not otherwise appropriated, 

7 for fiscal years 2006 through 2010 a total of 

8 $218,000,000, of which— 

9 (A) the amount specified in paragraph (2) 

10 shall be available for each of fiscal years 2006 

11 through 2010; and 

12 (B) a total of $1,000,000 shall be available 

13 to the Secretary for the evaluations and report 

14 under subsection (f). 

15 (2) FISCAL YEAR LIMIT.— 

16 (A) IN GENERAL.—For purposes of para17 graph (1), the amount specified in this para18 graph for a fiscal year is the amount specified 

19 in subparagraph (B) for the fiscal year plus the 

20 difference, if any, between the total amount 

21 available under this paragraph for prior fiscal 

22 years and the total amount previously expended 

23 under paragraph (1)(A) for such prior fiscal 

24 years. 
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1 (B) FISCAL YEAR AMOUNTS.—The amount 

2 specified in this subparagraph for— 

3 (i) fiscal year 2006 is $21,000,000; 

4 (ii) fiscal year 2007 is $37,000,000; 

5 (iii) fiscal year 2008 is $49,000,000; 

6 (iv) fiscal year 2009 is $53,000,000; 

7 and 

8 (v) fiscal year 2010 is $57,000,000. 

9 SEC. 5. DEVELOPMENT AND SUPPORT OF FAMILY-TO-FAM10 ILY HEALTH INFORMATION CENTERS. 

11 Section 501 (42 U.S.C. 701) is amended by adding 

12 at the end the following new subsection: 

13 ‘‘(c)(1)(A) For the purpose of enabling the Secretary 

14 (through grants, contracts, or otherwise) to provide for 

15 special projects of regional and national significance for 

16 the development and support of family-to-family health in17 formation centers described in paragraph (2)— 

18 ‘‘(i) there is appropriated to the Secretary, out 

19 of any money in the Treasury not otherwise appro20 priated— 

21 ‘‘(I) $3,000,000 for fiscal year 2006; 

22 ‘‘(II) $4,000,000 for fiscal year 2007; and 

23 ‘‘(III) $5,000,000 for fiscal year 2008; and 
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1 ‘‘(ii) there is authorized to be appropriated to 

2 the Secretary, $5,000,000 for each of fiscal years 

3 2009 and 2010. 

4 ‘‘(B) Funds appropriated or authorized to be appro5 priated under subparagraph (A) shall— 

6 ‘‘(i) be in addition to amounts appropriated 

7 under subsection (a) and retained under section 

8 502(a)(1) for the purpose of carrying out activities 

9 described in subsection (a)(2); and 

10 ‘‘(ii) remain available until expended. 

11 ‘‘(2) The family-to-family health information centers 

12 described in this paragraph are centers that— 

13 ‘‘(A) assist families of children with disabilities 

14 or special health care needs to make informed 

15 choices about health care in order to promote good 

16 treatment decisions, cost-effectiveness, and improved 

17 health outcomes for such children; 

18 ‘‘(B) provide information regarding the health 

19 care needs of, and resources available for, such chil20 dren; 

21 ‘‘(C) identify successful health delivery models 

22 for such children; 

23 ‘‘(D) develop with representatives of health care 

24 providers, managed care organizations, health care 

25 purchasers, and appropriate State agencies a model 
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1 for collaboration between families of such children 

2 and health professionals; 

3 ‘‘(E) provide training and guidance regarding 

4 caring for such children; 

5 ‘‘(F) conduct outreach activities to the families 

6 of such children, health professionals, schools, and 

7 other appropriate entities and individuals; and 

8 ‘‘(G) are staffed— 

9 ‘‘(i) by such families who have expertise in 

10 Federal and State public and private health 

11 care systems; and 

12 ‘‘(ii) by health professionals. 

13 ‘‘(3) The Secretary shall develop family-to-family 

14 health information centers described in paragraph (2) in 

15 accordance with the following: 

16 ‘‘(A) With respect to fiscal year 2006, such cen17 ters shall be developed in not less than 25 States. 

18 ‘‘(B) With respect to fiscal year 2007, such 

19 centers shall be developed in not less than 40 States. 

20 ‘‘(C) With respect to fiscal year 2008, such cen21 ters shall be developed in all States. 

22 ‘‘(4) The provisions of this title that are applicable 

23 to the funds made available to the Secretary under section 

24 502(a)(1) apply in the same manner to funds made avail25 able to the Secretary under paragraph (1)(A). 
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1 ‘‘(5) For purposes of this subsection, the term ‘State’ 

2 means each of the 50 States and the District of Colum3 bia.’’. 

4 SEC. 6. RESTORATION OF MEDICAID ELIGIBILITY FOR CER5 TAIN SSI BENEFICIARIES. 

6 (a) IN GENERAL.—Section 1902(a)(10)(A)(i)(II) (42 

7 U.S.C. 1396a(a)(10)(A)(i)(II)) is amended— 

8 (1) by inserting ‘‘(aa)’’ after ‘‘(II)’’; 

9 (2) by striking ‘‘) and’’ and inserting ‘‘and’’; 

10 (3) by striking ‘‘section or who are’’ and insert11 ing ‘‘section), (bb) who are’’; and 

12 (4) by inserting before the comma at the end 

13 the following: ‘‘, or (cc) who are under 21 years of 

14 age and with respect to whom supplemental security 

15 income benefits would be paid under title XVI if 

16 subparagraphs (A) and (B) of section 1611(c)(7) 

17 were applied without regard to the phrase ‘the first 

18 day of the month following’ ’’. 

19 (b) EFFECTIVE DATE.—The amendments made by 

20 subsection (a) shall apply to medical assistance for items 

21 and services furnished on or after January 1, 2006. 

Æ