H. R. 6208
IN THE HOUSE OF REPRESENTATIVES
September 23, 2010
Ms. Lee of California introduced the following bill; which was referred to the Committee on Energy and Commerce
To expand and enhance existing adult day programs for people with multiple sclerosis or other similar diseases, to support and improve access to respite services for family caregivers who are taking care of such people, and for other purposes.
This Act may be cited as the
Adult Day Achievement Center
The Congress finds the following:
Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system, which is made up of the brain, spinal cord, and optic nerves. Most people with multiple sclerosis are diagnosed between the ages of 20 and 50 years of age.
The symptoms of MS may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another.
Persons living with MS who experience more severe forms of MS are likely to require either home care or nursing home placement, though the vast majority would prefer to remain at home to receive the care they need. Where home care is concerned, approximately 80 percent of such care is provided by informal, unpaid, caregivers who are generally family members.
Family caregivers of people with MS generally average 60 years of age. Almost half spend more than 20 hours per week providing care for their family member living with MS and have been fulfilling this role on average for over 13 years.
In general, family
caregivers, the majority of whom are women, provide an estimated
free services annually. The pool of
potential family caregivers is dwindling, from 11 potential caregivers for each
person needing care today to a projected 4 to 1 ratio by 2050.
Recent studies indicate that the total estimated cost to employers for full-time employees with intensive caregiving responsibilities is $17,100,000,000. The total estimated cost to employers for all full-time, employed caregivers is $33,600,000,000 annually.
Adult day programs can offer services, including medical care, rehabilitation therapies, dignified assistance with activities of daily living, nutrition therapy, health monitoring, social interaction, stimulating activities, and transportation, to seniors, people with disabilities, and younger adults with chronic diseases.
Adult day programs geared toward people living with MS, or other similar diseases, provide an important response to the needs of people with severe MS and their caregivers. These MS Adult Day Programs (MSADPs) can help to ameliorate MS symptoms, reduce dependency, provide important socialization opportunities, and maintain quality of life.
MSADP programs have been shown to provide a range of documented benefits to people living with MS including improvements in functional status, fatigue, depression, pain and social support. MSADPs also reduce ongoing medical care and hospital costs and decrease admissions to nursing home facilities, which can be costly for many families, by allowing individuals to receive health and social services while continuing to live at home.
There are less than a dozen MSADPs in the United States at present and as a result the majority of people living with MS are unable to access this important opportunity for maximizing their health and wellness. Although people living with MS may be able to access other existing adult day programs, such programs are not typically intended for younger adults living with chronic diseases like MS, and may not provide the appropriate services to meet the age-related or disability status of these individuals.
Establishment of adult day programs
Survey of existing adult day programs
Not later than 90 days after the date of the enactment of this section, the Assistant Secretary for Aging shall initiate a comprehensive survey of current adult day programs that provide care and support to individuals living with multiple sclerosis, including any multiple sclerosis adult day programs and other similar adult day programs as defined in this Act.
In carrying out the survey under paragraph (1), the Assistant Secretary for Aging may utilize existing publicly available research on adult day programs, and shall—
identify ongoing successful MSADPs and other similar adult day programs, including by providing a brief description of how such programs were initially established and funded;
develop a set of best practices to help guide the establishment and replication of additional successful MSADPs and other similar adult day programs, including—
recommendations on the scope of services that should be provided (which may include rehabilitation therapy, psychosocial support, social stimulation and interaction, and spiritual, educational, or other such services); and
performance goals and indicators to measure and analyze the outcomes generated by the services provided and to evaluate the overall success of the program; and
evaluate the extent to which the Administration on Aging supports MSADPs and other similar adult day programs, either directly or indirectly, through current Federal grant programs.
Not later than 180 days after initiating the survey under paragraph (1), the Assistant Secretary for Aging shall produce and make publicly available a summary report on the results of the survey. Such report shall include each of the elements described in paragraph (2).
Establishment of grant program
Not later than 90 days after producing the report required by subsection (a)(3), the Assistant Secretary for Aging shall establish within the Administration on Aging a competitive grant program for awarding grants annually to eligible entities, based on the best practices developed under subsection (a), to fund MSADPs and other similar adult day programs.
In order to be eligible for a grant under this subsection, an entity shall demonstrate the following:
Understanding of the special needs of people living with multiple sclerosis or other similar diseases, including their functional abilities and the potential complications across all types of cases and stages of multiple sclerosis or other such similar diseases.
Understanding of the issues experienced by family caregivers who assist a family member with multiple sclerosis or another such similar disease.
A capacity to provide the services recommended by the best practices developed under subsection (a).
Additional selection requirement
The Assistant Secretary for Aging shall not award a grant to an entity under this subsection if the amount of the award would constitute more than 40 percent of the operating budget of the entity in the fiscal year for which funds for the grant are authorized to be expended. For purposes of this subsection, the fair market value of annual in-kind contributions of equipment or services shall be considered as part of the operating budget of the entity.
Selection of grant recipients
Not later than 90 days after establishing the grant program under this subsection, the Assistant Secretary for Aging shall award the first annual series of grants under the program. In awarding grants under this subsection, the Assistant Secretary should ensure, to the extent practicable, a diverse geographic representation among grant recipients and that, subject to the availability of appropriations—
a minimum of 5 entities are selected as grant recipients for the first fiscal year for which such grants are awarded;
a minimum of 10 entities are selected as grant recipients for the second such fiscal year;
a minimum of 12 entities are selected as grant recipients for the third such fiscal year; and
a minimum of 15 entities are selected as grant recipients for the fourth such fiscal year.
No later than 1 year after the initial award of grants under this subsection, and annually thereafter, the Assistant Secretary for Aging shall produce and make publicly available a brief summary report on the grant program under this section. Each such report shall include the following:
A description of the adult day programs receiving funding under this section, including the amount of Federal funding awarded and the expected outcomes of each program.
A description of performance goals and indicators to monitor the progress of grant recipients in—
responding to the needs of individuals living with multiple sclerosis or other such similar chronic diseases; and
assisting the family caregivers of such individuals.
Any plans for improving oversight and management of the grant program.
In this Act:
The term multiple sclerosis adult day program or MSADP means an adult day program that provides comprehensive and effective care and support services to individuals living with multiple sclerosis and their family caregivers and that may assist participants in ways that—
maintain or improve their functional abilities, or otherwise help them adjust to their changing functional abilities;
prevent the onset of complications associated with severe forms of the disease;
promote alternatives to placement in nursing homes;
reduce the strain on family caregivers taking care of a family member with multiple sclerosis; or
focus on supporting the emotional, social, and intellectual needs of a younger adult population.
The term other similar adult day program means an adult day program that provides a set of services similar to those of an MSADP, but for individuals living with other chronic diseases similar to multiple sclerosis that affect an individual’s central nervous system, and that may result in a functional or degenerative disability.
The term family caregiver means a family member or foster parent who provides unpaid assistance (which may include in-home monitoring, management, supervision, care and treatment, or other similar assistance) to another adult family member with a special need.
Authorization of appropriations
To carry out this section, in addition to amounts otherwise made available for such purpose, there are authorized to be appropriated, and to remain available until expended, the following:
$1,000,000 for fiscal year 2011.
$3,000,000 for fiscal year 2012.
$6,000,000 for fiscal year 2013.
$8,000,000 for fiscal year 2014.
$10,000,000 for fiscal year 2015.