[Congressional Record Volume 150, Number 62 (Thursday, May 6, 2004)]
[Senate]
[Pages S4946-S4951]
From the Congressional Record Online through the 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.
[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
[[Page S4947]]
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.]
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:
[[Page S4948]]
``(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--
``(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
[[Page S4949]]
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 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:
[[Page S4950]]
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 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
[[Page S4951]]
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.
____________________