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. HIN-
CHEY, Mr. COOPER, Ms. BALDWIN, and Mr. MCDERMOTT) introduced the 
following bill; which was referred to the Committee on Energy and Com-
merce 
A BILL 
To amend title XIX of the Social Security Act to provide 
families of disabled children with the opportunity to pur-
chase coverage under the Medicaid Program for such 
children, and for other purposes. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Family Opportunity 
Act of 2005’’or the ‘‘Dylan Lee James Act’’. 
SEC. 2. REFERENCES; TABLE OF CONTENTS. 
(a) AMENDMENTS TO SOCIAL SECURITY ACT.—Ex-
cept as otherwise specifically provided, whenever in this 
title an amendment is expressed in terms of an amend-
ment to or repeal of a section or other provision, the ref-
erence shall be considered to be made to that section or 
other provision of the Social Security Act. 
(b) TABLE OF CONTENTS.—The table of contents for 
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 cov-
erage for such children. 
Sec. 4. Demonstration projects regarding home and community-based alter-
native to psychiatric residential treatment facilities for chil-
dren. 
Sec. 5. Development and support of family-to-family health information centers. 
Sec. 6. Restoration of medicaid eligibility for certain SSI beneficiaries. 
SEC. 3. OPPORTUNITY FOR FAMILIES OF DISABLED CHIL-
DREN TO PURCHASE MEDICAID COVERAGE 
FOR SUCH CHILDREN. 
(a) STATE OPTION TO ALLOW FAMILIES OF DIS-
ABLED 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 sub-
clause (XVII); 
(ii) by adding ‘‘or’’ at the end of sub-
clause (XVIII); and 
(iii) by adding at the end the fol-
lowing 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 are children who have not attained 19 
years of age and are born— 
‘‘(i) on or after October 1, 1999 (or, at the 
option of a State, on or after an earlier date), 
in the case of fiscal year 2006; 
‘‘(ii) on or after October 1, 1994 (or, at 
the option of a State, on or after an earlier 
date), in the case of fiscal year 2007; and 
‘‘(iii) after October 1, 1988, in the case of 
fiscal year 2008 and any fiscal year thereafter; 
‘‘(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) 300 percent of the poverty line (as de-
fined in section 2110(c)(5)) applicable to a fam-
ily 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 ex-
ceeds 300 percent of such poverty line may 
only be provided with State funds; and 
‘‘(II) no Federal financial participa-
tion shall be provided under section 
1903(a) for any medical assistance pro-
vided 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 eligi-
ble for such coverage and the employer contributes 
at least 50 percent of the total cost of annual pre-
miums 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 rea-
sonably 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)(A)(iii)(II), 
may provide for payment of any portion of the annual pre-
mium for such family coverage that the parent is required
to pay. Any payments made by the State under this sub-
paragraph 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 amend-
ed— 
(1) in subsection (a), by striking ‘‘subsection 
(g)’’ and inserting ‘‘subsections (g) and (h)’’; and 
(2) by adding at the end the following new sub-
section: 
‘‘(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 man-
ner 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 para-
graph (1) may only apply to the extent that— 
‘‘(A) in the case of a disabled child described in 
that paragraph whose family income— 
‘‘(i) does not exceed 200 percent of the 
poverty line, the aggregate amount of such pre-
mium and any premium that the parent is re-
quired to pay for family coverage under section 
1902(cc)(2)(A)(i) 
and 
other 
cost 
sharing
charges do not exceed 5 percent of the family’s 
income; and 
‘‘(ii) exceeds 200, but does not exceed 300, 
percent of the poverty line, the aggregate 
amount of such premium and any premium that 
the parent is required to pay for family cov-
erage under section 1902(cc)(2)(A)(i) and other 
cost sharing charges do 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 pre-
mium 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 at least 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 pay-
ment would create an undue hardship.’’. 
(c) 
CONFORMING
AMENDMENTS.—(1) 
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),’’. 
(2) 
Section 
1905(u)(2)(B) 
(42 
U.S.C. 
1396d(u)(2)(B)) is amended by adding at the end the fol-
lowing sentence: ‘‘Such term excludes any child eligible for 
medical 
assistance 
only 
by 
reason 
of 
section 
1902(a)(10)(A)(ii)(XIX).’’. 
(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. 4. DEMONSTRATION PROJECTS REGARDING HOME 
AND COMMUNITY-BASED ALTERNATIVE TO 
PSYCHIATRIC RESIDENTIAL TREATMENT FA-
CILITIES FOR CHILDREN. 
(a) IN GENERAL.—The Secretary of Health and 
Human Services (in this section referred to as the ‘‘Sec-
retary’’) is authorized to conduct, during each of fiscal 
years 2006 through 2010, demonstration projects (each 
in the section referred to as a ‘‘demonstration project’’) 
in accordance with this section under which up to 10 
States (as defined for purposes of title XIX of the Social 
Security Act) are awarded grants, on a competitive basis, 
to test the effectiveness in improving or maintaining a 
child’s functional level and cost-effectiveness of providing 
coverage of home and community-based alternatives to
psychiatric residential treatment for children enrolled in 
the medicaid program under title XIX of such Act. 
(b) APPLICATION OF TERMS AND CONDITIONS.— 
(1) IN GENERAL.—Subject to the provisions of 
this section, for the purposes of the demonstration 
projects, and only with respect to children enrolled 
under such demonstration projects, a psychiatric res-
idential treatment facility (as defined in section 
483.352 of title 42 of the Code of Federal Regula-
tions) shall be deemed to be a facility specified in 
section 1915(c) of the Social Security Act (42 
U.S.C. 1396n(c)), and to be included in each ref-
erence in such section 1915(c) to hospitals, nursing 
facilities, and intermediate care facilities for the 
mentally retarded. 
(2) STATE OPTION TO ASSURE CONTINUITY OF 
MEDICAID COVERAGE.—Upon the termination of a 
demonstration project under this section, the State 
that conducted the project may elect, only with re-
spect to a child who is enrolled in such project on 
the termination date, to continue to provide medical 
assistance for coverage of home and community- 
based alternatives to psychiatric residential treat-
ment for the child in accordance with section 
1915(c) of the Social Security Act (42 U.S.C.
1396n(c)), as modified through the application of 
paragraph (1). Expenditures incurred for providing 
such medical assistance shall be treated as a home 
and community-based waiver program under section 
1915(c) of the Social Security Act (42 U.S.C. 
1396n(c)) for purposes of payment under section 
1903 of such Act (42 U.S.C. 1396b). 
(c) TERMS OF DEMONSTRATION PROJECTS.— 
(1) IN
GENERAL.—Except as otherwise pro-
vided in this section, a demonstration project shall 
be subject to the same terms and conditions as apply 
to a waiver under section 1915(c) of the Social Se-
curity Act (42 U.S.C. 1396n(c)), including the waiv-
er of certain requirements under the first sentence 
of paragraph (3) of such section but not applying 
the second sentence of such paragraph. 
(2) BUDGET NEUTRALITY.—In conducting the 
demonstration projects under this section, the Sec-
retary shall ensure that the aggregate payments 
made by the Secretary under title XIX of the Social 
Security Act (42 U.S.C. 1396 et seq.) do not exceed 
the amount by which the Secretary estimates would 
have been paid under that title if the demonstration 
projects under this section had not been imple-
mented.
(3) EVALUATION.—The application for a dem-
onstration project shall include an undertaking to 
provide for such interim and final evaluations of the 
demonstration project by independent third parties, 
and for such interim and final reports to the Sec-
retary, as the Secretary may require. 
(d) PAYMENTS TO STATES; LIMITATIONS TO SCOPE 
AND FUNDING.— 
(1) IN GENERAL.—Subject to paragraph (2), a 
demonstration project approved by the Secretary 
under this section shall be treated as a home and 
community-based waiver program under section 
1915(c) of the Social Security Act (42 U.S.C. 
1396n(c)) for purposes of payment under section 
1903 of such Act (42 U.S.C. 1396b). 
(2) LIMITATION.—In no case may the amount 
of payments made by the Secretary under this sec-
tion for State demonstration projects for a fiscal 
year exceed the amount available under subsection 
(f)(2)(A) for such fiscal year. 
(e) SECRETARY’S EVALUATION AND REPORT.—The 
Secretary shall conduct an interim and final evaluation of 
State demonstration projects under this section and shall 
report to the President and Congress the conclusions of
such evaluations within 12 months of completing such 
evaluations. 
(f) FUNDING.— 
(1) IN GENERAL.—For the purpose of carrying 
out this section, there are appropriated, from 
amounts in the Treasury not otherwise appropriated, 
for fiscal years 2006 through 2010 a total of 
$218,000,000, of which— 
(A) the amount specified in paragraph (2) 
shall be available for each of fiscal years 2006 
through 2010; and 
(B) a total of $1,000,000 shall be available 
to the Secretary for the evaluations and report 
under subsection (f). 
(2) FISCAL YEAR LIMIT.— 
(A) IN GENERAL.—For purposes of para-
graph (1), the amount specified in this para-
graph for a fiscal year is the amount specified 
in subparagraph (B) for the fiscal year plus the 
difference, if any, between the total amount 
available under this paragraph for prior fiscal 
years and the total amount previously expended 
under paragraph (1)(A) for such prior fiscal 
years.
(B) FISCAL YEAR AMOUNTS.—The amount 
specified in this subparagraph for— 
(i) fiscal year 2006 is $21,000,000; 
(ii) fiscal year 2007 is $37,000,000; 
(iii) fiscal year 2008 is $49,000,000; 
(iv) fiscal year 2009 is $53,000,000; 
and 
(v) fiscal year 2010 is $57,000,000. 
SEC. 5. DEVELOPMENT AND SUPPORT OF FAMILY-TO-FAM-
ILY 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 in-
formation centers described in paragraph (2)— 
‘‘(i) there is appropriated to the Secretary, out 
of any money in the Treasury not otherwise appro-
priated— 
‘‘(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 appro-
priated 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, such chil-
dren; 
‘‘(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— 
‘‘(i) by such families who have expertise in 
Federal and State public and private health 
care systems; and 
‘‘(ii) by 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 cen-
ters 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 cen-
ters 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 avail-
able 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 Colum-
bia.’’. 
SEC. 6. RESTORATION OF MEDICAID ELIGIBILITY FOR CER-
TAIN 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 insert-
ing ‘‘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. 
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