March 30, 2010
Ms. Kathy Greenlee
Assistant Secretary for Aging
U.S. Administration on Aging
Washington, DC 20201
Dear Secretary Greenlee:
It was a pleasure meeting you at the Reauthorization Listening Forum in Alexandria on
February 25. The medical emergency that occurred during Henry Claypool’s
presentation was a first for me!
The Disability Policy Collaboration (DPC) is a joint venture of The Arc of the United
States (The Arc) and United Cerebral Palsy (UCP) that focuses on legislative and legal
supports to improve the lives of individuals with disabilities and their families. The Arc
is a membership organization of 732 state and local chapters made up of people with
intellectual, developmental and other disabilities, their families, friends, interested
citizens, and professionals in the disability field. UCP is an organization that provides
services and advocacy to people with disabilities through a nationwide network of over
100 organizations. Both The Arc and UCP have represented individuals with disabilities
for 60 years.
When we chatted at the listening forum, I mentioned very briefly that individuals with
intellectual and developmental disabilities, their families and advocates had concerns
about language in Title III of the Older Americans Act (OAA) that we would like to
address during the reauthorization process. You encouraged me to submit input to your
agency. We appreciate that opportunity.
We would be happy to discuss our suggestions in greater detail if that would be helpful.
We look forward to your leadership and to working with you.
Sincerely,
Maureen Fitzgerald
Director, Disability Rights
Cc: Ms. Abbe Linscott Lackmeyer
Input concerning Reauthorization of the Older Americans Act
When the Older Americans Act (OAA) was amended in 2006, parent caregivers of adult
children with disabilities were omitted. Specifically, Section 372 excluded biological and
adoptive parents of adult children with disabilities from the definition of relative
caregiver.
A careful reading of the OAA, the Older Americans Act Amendments of 2006 and the
legislative history that accompanied the 2006 amendments demonstrates that
Congressional intent was to include rather than exclude parent caregivers of adult
children with disabilities. DPC believes that Section 372 of Title III simply was poorly
drafted.
The OAA includes several references to individuals with disabilities. “Disability” and
“severe disability” are defined using language from the definition of developmental
disability found in the Developmental Disabilities Assistance and Bill of Rights Act.
Caregivers of individuals with severe disabilities were given priority status in the family
caregiver support program section of the 2006 amendments. In general, people with
severe or developmental disabilities have their disabilities from birth. Inclusion of these
individuals in the OAA and the 2006 amendments suggests that the Act was meant to
address the family caregiver support needs of people – largely mothers, caring for adult
children with disabilities.
The OAA uses the term “adult children with disabilities” and includes a definition of an
“adult child with a disability” as someone 18 years of age or older with a disability who
is financially dependent on a parent. In the 2006 amendments, the term “child” was
amended to specifically include individuals with disabilities. These references support
the argument that Congress meant to include parents and other relative caregivers of adult
children with disabilities in family caregiver support programs.
Specifically, the OAA and its 2006 amendments discuss adult children with disabilities
and parent caregivers in the following sections:
Section 102 – Definitions.
(a) For the purposes of this Act -(3) The term “adult child with a disability” means a child who
(A) is 18 years of age or older;
(B) is financially dependent on an older individual who is a parent of the
child, and
(C) has a disability. (Emphasis added)
(13) The term ‘‘disability’’ means (except when such term is used in the phrase
‘‘severe disability’’, ‘‘developmental disability- (sic) ‘‘physical or mental
disability’’, ‘‘physical and mental disabilities’’, or ‘‘physical disabilities’’) a
disability attributable to mental or physical impairment, or a combination of
mental and physical impairments, that results in substantial functional limitations
in 1 or more of the following areas of major life activity:
(A) self-care,
(B) receptive and expressive language,
(C) learning,
(D) mobility,
(E) self-direction,
(F) capacity for independent living,
(G) economic self-sufficiency,
(H) cognitive functioning, and
(I) emotional adjustment.
(48) The term ‘‘severe disability’’ means a severe, chronic disability attributable
to mental or physical impairment, or a combination of mental and physical
impairments, that—
(A) is likely to continue indefinitely; and
(B) results in substantial functional limitation in 3 or more of the major
life activities specified in subparagraphs (A) through (G) of paragraph (8)
(sic).
Section 321 - Supportive Services and Senior Centers Program Authorized.
(a) The Assistant Secretary shall carry out a program for making grants to States . . . for
any of the following supportive services:
(6) services designed to provide to older individuals legal assistance and other
counseling services and assistance, including—
(C) provision, to older individuals who provide uncompensated care to
their adult children with disabilities, of counseling to assist such older
individuals with permanency planning for such children;
(11) provision of services and assistive devices (including provision of assistive
technology services and assistive technology devices) which are designed to meet
the unique needs of older individuals who are disabled, and of older individuals
who provide uncompensated care to their adult children with disabilities;
(Emphasis added)
Section 373. Program Authorized.
(c) Population served; Priority.
(2) Priority. In providing services under this subpart, the State . . . shall give priority
(B) to older individuals providing care to individuals with severe disabilities, including
children with severe disabilities. (Emphasis added)
Section 419 – Multidisciplinary Centers and Multidisciplinary Systems.
(a) Multidisciplinary Centers.
(1) Program Authorized. The Assistant Secretary may make grants to public and
private nonprofit agencies . . .for the purpose of establishing or supporting . .
gerontology centers of special emphasis (including . . . disabilities (including
severe disabilities) . . . (Emphasis added)
A review of the legislative history of the Older Americans Act Amendments of 2006 also
suggests that Congress fully intended to make Family Caregiver Support services
available to caregivers of adult children with disabilities.
On May 10, 2006 the Subcommittee on Education Reform adopted an amendment which
reauthorized and made permanent activities of national significance to support assistance
to caregivers of a family member with a disability. The subcommittee also adopted an
amendment changing the definition of “child” to include an individual with a disability.
(Emphasis added)
The June 8, 2006 House Committee on Education and the Workforce Report stated that,
. . . relatives provide the bulk of long-term care services to family members with
physical and cognitive disabilities. . . (The) Act expands eligibility for caregiver
support to grandparents and other relatives age 55 years of age or older who care
for a grandchild or an adult child with a disability. (Emphasis added.)
Speaking in support of the bill during the Senate vote on September 28, 2006 Senator
Barbara Mikulski said:
The bill strengthens the National Family Caregiver Support Program by providing
respite services to older adults who care for their children who are disabled . . .
(emphasis added).
Senator Herb Kohl said,
I was an original cosponsor of this program (the Family Caregiver Support
program), which ensures that family members who care for an elderly or disabled
relative receive the support and respite services they need. (Emphasis added)
Senator Michael DeWine said,
This funding will also help . . . programs supporting families who are caring for
disabled loved ones, including the elderly and adult children with disabilities, and
grandparents who are caring for their grandchildren. . . . Ohioans caring for a
disabled family member spend an average of 4.2 years in this role—time
impacting their job, their emotions, and their health. (Emphasis added)
Our bill will also increase the Federal funding levels for the National Family
Caregiver Support Program over the next 5 years. This important program helps
families care for loved ones who are severely ill or disabled, yet want to remain in
their homes and community. . . Our bill also clarifies that this program will serve
elderly caregivers who are caring for their adult children with developmental
disabilities and expand that provision to include all adult children with
disabilities who are being cared for by an elderly parent. Lastly, it clarifies that
grandparents caring for adopted grandchildren are covered under the National
Family Caregiver Support Program and lowers the age threshold for grandparents
to 55 years old. (Emphasis added)
In the 2008 State of the States in Developmental Disabilities1, David Braddock estimated
that 1.7 million individuals with intellectual and developmental disabilities were being
supported by family caregivers. Fifty-eight percent of those caregivers were between the
ages of 41 and 59 and were caring for almost one million individuals.
In a recent study of 206 caregivers in Illinois by the Institute on Disability and Human
Development at the University of Illinois at Chicago2, researchers found that 86.3% of
aging caregivers of individuals with developmental disabilities were mothers and 10.8%
were sisters. Sixty-three percent of the caregivers were middle age (40-59 years of age).
In the study, caregivers of individuals with developmental disabilities had significantly
higher rates of arthritis, high blood pressure, obesity, and activity limitations than women
in the general population.
In November 2009 the National Alliance for Caregiving (NAC) in collaboration with
AARP with funding from the MetLife Foundation, released the 2009 National Caregiver
Survey. The study found that three in 10 caregivers were caring for someone under the
age of 50. That prompted NAC and AARP to conduct a focused look at caregivers of
younger adults ages 18 to 49.3
NAC found that 14% of the nation’s 65.7 million caregivers were caring for younger
adults ages 18 to 49. Thirty-nine percent of caregivers of younger adults were parental
caregivers. Caregivers who provided care to their own adult child had been in that role an
1
Braddock, D., Hemp, R., & Rizzolo, M. (2008). The State of the State in Developmental Disabilities.
Boulder: Department of Psychiatry and Coleman Institute for Cognitive Disabilities, University of
Colorado.
2
Yamaki, K., Hseih, K., & Heller, T. (2009). Health profile of aging family caregivers supporting adults
with intellectual and developmental disabilities at home. Intellectual and Developmental Disabilities,
47(6), 425-435.
3
National Alliance for Caregiving and AARP. (2009, November). Caregivers of Younger Adults: A
Focused Look at Those Caring for Someone Age 18 to 49. Washington, DC.
average of 14 years. The average age of caregivers of younger adults was 45.8 years of
age. They were providing care for younger adults whose average age was 31.8 years.
Caregivers provided on average almost 20 hours per week of care; however, 11%
provided more than 40 hours of care per week
The main reasons for providing care to younger adults were mental or emotional illness
and developmental disability, including intellectual disability and Down syndrome.
Seventy-five percent of caregivers of younger adults had at least one job impact (adjusted
work schedule, loss of job benefits, leave of absence) due to their caregiving.
Several societal factors are coalescing toward a crisis in the lives of individuals with
intellectual and developmental disabilities and their caregivers: the economic situation
facing states, the lengthy waiting lists for residential services and supports, extended
longevity of adults with intellectual and developmental disabilities, and the aging of the
baby boomer generation. Parents and family members likely will continue to be the
largest providers of residential support for individuals with intellectual and
developmental disabilities for some time to come. They will grow older and their
numbers will continue to grow.
It is my understanding that a technical amendment was proposed under the previous
administration to address the language problems of the OAA Amendments of 2006.
Unfortunately, the agreement advocates believed they had reached with the
administration broke down at the eleventh hour.
DPC believes that Congress fully intended to include caregivers of adult children with
disabilities in the Family Caregiver Support program when it amended the OAA in 2006.
DPC is hopeful that the reauthorization process and the President’s Caregiver Initiative
and proposed $50 million increase in funding for the family caregiver support program
offer another opportunity to correct the inadvertent omission of these caregivers.
DPC suggests the following changes to Title III of the OAA Amendments of 2006 (new
language that should be added is underscored; language that should be deleted is marked
by strikethrough):
§ 302 (42 U.S.C. 3022). Definitions
(3) The term "family caregiver" means an adult family member, or another
individual, who is an informal provider of in-home and community care to an older
individual or to an individual with Alzheimer’s disease or a related disorder with
neurological and organic brain dysfunction. has the meaning given in section 372(1).
§ 372 (42 U.S.C. 3030s). Definitions
(a) In General.In this subpart:
(1) CHILD. Family caregiver.--The term “child” "family caregiver" means an
individual who is not more than 18 years of age or who is an individual with a disability.
adult family member, or another adult, who is an informal provider of in-home and
community care to an older individual or to an individual with Alzheimer's disease or a
related disorder with neurological and organic brain dysfunction.
(2) GRANDPARENT OR Older individual who is a relative caregiver.–The term
“grandparent or older individual who is a relative caregiver” means a grandparent
or step-grandparent of a child, or a relative of a child b blood, marriage, or
adoption who is 55 years of age or older and-(A) lives with the child;
(B) is the primary caregiver of the child because the biological or adoptive
parents are unable or unwilling to serve as the primary caregiver of the
child; and
(C) has a legal relationship to the child, as such legal custody or
guardianship, or is raising the child informally.
(A) In general.–The term "older relative caregiver" means an individual
aged 55 or older who lives with and is the primary caregiver of a relative by
blood, marriage, or adoption, in accordance with subparagraph (B) or (C), but
such term does not include an individual who is a family caregiver as defined in
paragraph (1).
(B) Relative caregiver of person 18 or under.– A relative caregiver of a
person not more than 18 years of age may be the grandparent, stepgrandparent, or
other relative of such person (other than the parent), who–
(i) is the primary caregiver of such person because the biological
or adoptive parents are unable or unwilling to serve as the primary
caregiver; and
(ii) has a legal relationship to such person, such as legal custody or
guardianship, or is raising such person informally.
(C) Relative caregiver of disabled person of any age.– A relative caregiver
of a person who is an individual with a disability of any age (including such a
person aged 18 or younger) may be the parent, grandparent, or other relative of
such person.
(b) RULE.—In providing services under this subpart—
(1) for family caregivers who provide care for individuals with Alzheimer’s disease
and related disorders with neurological and organic brain dysfunction, the State
involved shall give priority to caregivers who provide care for older individuals with
such disease or disorder; and
(2) for grandparents or older individuals who are relative caregivers, the State
involved shall give priority to caregivers who provide care for children with severe
disabilities.
§ 373 (42 U.S.C. 3030s–1). Program authorized
(a) In general--The Assistant Secretary shall carry out a program for making grants to
States with State plans approved under section 307 of this title, to pay for the Federal
share of the cost of carrying out State programs, to enable area agencies on aging, or
entities that such area agencies on aging contract with, to provide multifaceted systems of
support services—
(1) for family caregivers; and
(2) for grandparents or older individuals who are relative caregivers.
(b) Support services.--The services provided, in a State program under subsection (a), by
an area agency on aging, or entity that such agency has contracted with, shall include—
(1) information to caregivers about available services;
(2) assistance to caregivers in gaining access to the services;
(3) individual counseling, organization of support groups, and caregiver training
to assist the caregivers in the areas of health, nutrition, and financial literacy, and in
making decisions and solving problems relating to their caregiving roles;
(4) respite care to enable caregivers to be temporarily relieved from their
caregiving responsibilities; and
(5) supplemental services, on a limited basis, to complement the care provided by
caregivers.
(c) Population served; priority.-(1) Population served. Services under a State program under this part shall be
provided to caregivers who—
(A) are described in paragraph (1) or (2) of subsection (a); and
(B) with regard to the services specified in paragraphs (4) and (5) of
subsection (b), in the case of a caregiver described in paragraph (1), is providing
care to an older individual who meets the condition specified in subparagraph
(A)(i) or (B) of section 102 (22).
(2) Priority. --In providing services under this subpart, the State, in addition to
giving the priority described in section 372(b), shall give priority—
(A) to caregivers who are older individuals with greatest social need, and
older individuals with greatest economic need (with particular attention to lowincome older individuals); and
(B) to older individuals providing care to individuals with severe
disabilities, including children with severe disabilities (subject to the limitation in
subsection (g)(2)(C));
(C) in the case of older relative caregivers, to such caregivers who provide
care for children with severe disabilities (subject to the limitation in subsection
(g)(2)(C)); and
(D) in the case of family caregivers who provide care for individuals with
Alzheimer's disease and related disorders with neurological and organic brain
dysfunction, to caregivers who provide care for older individuals with such
disease or disorder.
(d) Use of volunteers.--In carrying out this subpart, each area agency on aging shall make
use of trained volunteers to expand the provision of the available services described in
subsection (b) and, if possible, work in coordination with organizations that have
experience in providing training, placement, and stipends for volunteers or participants
(such as organizations carrying out Federal service programs administered by the
Corporation for National and Community Service), in community service settings.
(e) Quality standards and mechanisms and accountability.-(1) Quality standards and mechanisms. The State shall establish standards and
mechanisms designed to assure the quality of services provided with assistance made
available under this subpart.
(2) Data and records. The State shall collect data and maintain records relating to
the State program in a standardized format specified by the Assistant Secretary. The State
shall furnish the records to the Assistant Secretary, at such time as the Assistant Secretary
may require, in order to enable the Assistant Secretary to monitor State program
administration and compliance, and to evaluate and compare the effectiveness of the
State programs.
(3) Reports. The State shall prepare and submit to the Assistant Secretary reports
on the data and records required under paragraph (2), including information on the
services funded under this subpart, and standards and mechanisms by which the quality
of the services shall be assured. The reports shall describe any mechanisms used in the
State to provide to persons who are family caregivers or grandparents or older individuals
who are relative caregivers, information about and access to various services so that the
persons can better carry out their care responsibilities.
(f) Caregiver allotment
(1) In general.-(A) From sums appropriated under section 303(e) of this title for fiscal
years 2007, 2008, 2009, 2010, and 2011, the Assistant Secretary shall allot
amounts among the States proportionately based on the population of individuals
70 years of age or older in the States.
(B) In determining the amounts allotted to States from the sums
appropriated under section 303 of this title for a fiscal year, the Assistant
Secretary shall first determine the amount allotted to each State under
subparagraph (A) and then proportionately adjust such amounts, if necessary, to
meet the requirements of paragraph (2).
(C) The number of individuals 70 years of age or older in any State and in
all States shall be determined by the Assistant Secretary on the basis of the most
recent data available from the Bureau of the Census and other reliable
demographic data satisfactory to the Assistant Secretary.
(2) Minimum allotment.-(A) The amounts allotted under paragraph (1) shall be reduced
proportionately to the extent necessary to increase other allotments under such
paragraph to achieve the amounts described in subparagraph (B).
(B)
(i) Each State shall be allotted 1/2 of 1 percent of the amount
appropriated for the fiscal year for which the determination is made.
(ii) Guam and the Virgin Islands of the United States shall each be
allotted 1/4 of 1 percent of the amount appropriated for the fiscal year for
which the determination is made.
(iii) American Samoa and the Commonwealth of the Northern
Mariana Islands shall each be allotted 1/16 of 1 percent of the amount
appropriated for the fiscal year for which the determination is made.
(C) For the purposes of subparagraph (B)(i), the term “State” does not
include Guam, American Samoa, the Virgin Islands of the United States, and the
Commonwealth of the Northern Mariana Islands.
(g) Availability of funds.-(1) Use of funds for administration of area plans.-- Amounts made available to a
State to carry out the State program under this subpart may be used, in addition to
amounts available in accordance with section 303 (c)(1) of this title, for costs of
administration of area plans.
(2) Federal share.-(A) In general.--Notwithstanding section 304(d)(1)(D) of this title, the
Federal share of the cost of carrying out a State program under this subpart shall
be 75 percent.
(B) Non-Federal share. The non-Federal share of the cost shall be
provided from State and local sources.
(C) Limitation. A State may use not more than 10 percent of the total
Federal and non-Federal share available to the State to provide support services to
grandparents and older individuals who are relative caregivers of a child who is
not more than individuals who are 18 years of age or younger.
Respectfully submitted,
Maureen Fitzgerald
Director, Disability Rights
3/29/10