[Congressional Record Volume 145, Number 162 (Tuesday, November 16, 1999)]
[Senate]
[Pages S14637-S14642]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. HARKIN (for himself and Mr. Specter):
  S. 1935. A bill to amend title XIX of the Social Security Act to 
provide for coverage of community attendant services and supports under 
the Medicaid Program; to the Committee on Finance.


       the medicaid community attendant services and support act

  Mr. HARKIN. Mr. President, today, along with Senator Arlen Specter, I 
am introducing the Medicaid Community Attendant Services and Supports 
Act. Our bill allows people to have a real choice about where they 
receive certain types of Medicaid long term services and supports. It 
also provides grants to the States to assist them as they redirect 
Medicaid resources into community-based services and supports.
  We all know that given a real choice, most Americans who need long 
term services and supports would rather remain in their own homes and 
communities than go to a nursing home. Older people want to stay in 
their homes; parents want to keep their children with disabilities 
close by; and adults with disabilities want to live in the community.
  And yet, even though many people prefer home and community services 
and supports, our current long term care program favors institutional 
programs. Under our current Medicaid system, a person has a right to 
the most expensive form of care, a nursing home bed, because nursing 
home care is an entitlement. But if that same person wants to live in 
the community, he or she is likely to encounter a lack of available 
services, because community services are optional under Medicaid. The 
deck is stacked against community living, and the purpose of our bill 
is to level the playing field and give people a real choice.
  Our bill would allow any person entitled to medical assistance in a 
nursing facility or an intermediate care facility to use the money for 
community attendant services and supports. Those services and supports 
include help with eating, bathing, brooming, toileting, transferring in 
and out of a wheelchair, meal planning and preparation, shopping, 
household chores, using the telephone, participating in the community, 
and health-related functions like taking pills, bowel and bladder care, 
and tube feeding. In short, personal assistance services and supports 
help people do tasks that they would do them selves, if they did not 
have a disability.
  Personal assistance services and supports are the lowest-cost and 
most consumer friendly services in the long-term care spectrum. They 
can be provided by a variety of people, including friends and neighbors 
of the recipient. In many instances, with supervision, the consumer can 
direct his or her own care and manage his or her own attendants. This 
cuts down on expensive administrative overhead and the current practice 
of relying on medical personnel such as nurses to coordinate a person's 
care. States can save money and redirect medically-oriented care to 
those who need it most.
  Not only is home and community-based care what people want, it can 
also be far less expensive. There is a wide variation in the cost of 
supporting people with disabilities in the community because 
individuals have different levels of need. But, for the average person, 
the annual cost of home and community based services is less than one-
half the average cost of  institutional care. In 1997, Medicaid spent 
$56 billion on long term care. Out of that $56 billion, $42.5 billion 
was spent on nursing home and institutional care. This paid for a 
little over 1 million people. In comparison, only $13.5 billion was 
spent on home and community-based care--but this money paid for almost 
2 million people. Community services make sound, economic sense.

  In fact, the States are out ahead of us here in Washington on this 
issue. Thirty States are now providing the personal care optional 
benefit through their Medicaid programs. Almost every State offers at 
least one home and community based Medicaid waiver program. Indeed, 
this is one of Senator Chafee's most important legacies. He was ahead 
of his time.
  The States have realized that community based care is both popular 
and cost effective, and personal assistance services and supports are a 
key component of a successful program.
  And yet there are several reasons why we have to do more.
  Federal Medicaid policy should reflect the consensus that Americans 
with disabilities should have the equal opportunity to contribute to 
our communities and participate in our society as full citizens. 
Instead, our current Federal Medicaid policy favors exclusion over 
integration, and dependence over self-determination. This legislation 
will bring Medicaid policy in line with our broader agreement that 
Americans with disabilities should have the chance to move toward 
independence. This bill allows people to receive certain types of 
services in the community so that they don't have to sacrifice their 
full participation in society simply because they require a catheter, 
assistance with medication, or some other basic service.
  Take the example of a friend of mine in Iowa. Dan Piper works at a 
hardware store. He has his own apartment and just bought a VCR. He also 
has Down's syndrome and diabetes. For years Dan has received services 
through a community waiver program. But, he recently learned that he 
might not be

[[Page S14638]]

able to receive some basic services under the waiver. The result of 
this decision? He may have to sacrifice his independence for services. 
Today, Dan works and contributes to the economy as both a wage earner 
and a consumer. But, tomorrow, he may be forced into a nursing home, 
far from his roommate, his job, and his family.
  In addition, our country is facing a long-term care crisis of epic 
proportions in the not-too distant future. We all talk about the coming 
Social Security shortfall and the Medicare shortfall, but we do not 
talk about the long-term care shortfall. The truth is that our current 
long-term care system will be inadequate to deal with the aging of the 
baby boom generation, the oldest of whom are now turning 60. Our bill 
helps to create the infrastructure we will need to create the high-
quality, community based long term care system of the future. And it 
will give families the small amount of outside help they need to 
continue providing care to their loved ones at home.
  And, finally, in a common sense decision last June, the Supreme Court 
found that, to the extent Medicaid dollars are used to pay for a 
person's long term care, that person has a right to receive those 
services in the most integrated setting. States must take practical 
steps to avoid unjustified institutionalization by offering individuals 
with disabilities the supports they need to live in the community. We 
in Congress have a responsibility to help States meet the financial 
costs associated with serving people with disabilities that want to 
leave institutions and live in the community, and the bill I am 
introducing will provide that help.
  And so I call upon my colleagues for your support. Millions of 
Americans require some assistance to help them eat, dress, go to the 
bathroom, clean house, move from bed to wheelchair, remember to take 
medication, and to perform other activities that make it possible for 
them to live at home. These Americans live in every State and every 
congressional district. Most of these people have depended on unpaid 
caregivers--usually family members--for their needs. But a number of 
factors have affected the ability of family members to help. A growing 
number of elderly people need assistance, and aging parents will no 
longer be able to care for their adult children with disabilities.
  But they all have one thing in common with every American. We all 
deserve to live in our own homes, and be an integral part of our 
families, our neighborhoods, our communities. Community attendant 
services and supports allow people with disabilities to lead richer, 
fuller lives, perhaps have a job, and participate in the community. 
Some will become taxpayers, some will do volunteer work, some will get 
an education, some will participate in recreational and other community 
activities. All will experience a better quality of life, and a better 
chance to take part in the American dream.
  I urge my colleagues and their staff to study our proposal over the 
break. I hope there will be hearings and action on this bill next year. 
And, finally, I ask unanimous consent that the bill, along with letters 
in support of the bill, be printed in the Record.
  There being no objection, the material was ordered to be printed in 
the Record, as follows:

                                S. 1935

       Be it enacted by the Senate and House of Representatives of 
     the United States of America in Congress assembled,

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Medicaid Community Attendant 
     Services and Supports Act of 1999''.

     SEC. 2. FINDINGS, PURPOSES, AND POLICY.

       (a) Findings.--Congress makes the following findings:
       (1) Many studies have found that an overwhelming majority 
     of individuals with disabilities needing long-term services 
     and supports would prefer to receive them in home and 
     community-based settings rather than in institutions. 
     However, research on the provision of long-term services and 
     supports under the medicaid program (conducted by and on 
     behalf of the Department of Health and Human Services) has 
     revealed a significant bias toward funding these services in 
     institutional rather than home and community-based settings. 
     The extent of this bias is indicated by the fact that 75 
     percent of medicaid funds for long-term services and supports 
     are expended in nursing homes and intermediate care 
     facilities for the mentally retarded while approximately 25 
     percent of such funds pays for services in home and 
     community-based settings.
       (2) Because of this bias, significant numbers of 
     individuals with disabilities of all ages who would prefer to 
     live in the community and could do so with community 
     attendant services and supports are forced to live in 
     unnecessarily segregated institutional settings if they want 
     to receive needed services and supports. Benefit packages 
     provided in these settings are medically-oriented and 
     constitute barriers to the receipt of the types of services 
     individuals need and want. Decisions regarding the provision 
     of services and supports are too often influenced by what is 
     reimbursable rather than by what individuals need and want.
       (3) There is a growing recognition that disability is a 
     natural part of the human experience that in no way 
     diminishes an individual's right to--
       (A) live independently;
       (B) enjoy self-determination;
       (C) make choices;
       (D) contribute to society; and
       (E) enjoy full inclusion and integration in the mainstream 
     of American society.
       (4) Long-term services and supports provided under the 
     medicaid program must meet the evolving and changing needs 
     and preferences of individuals with disabilities, including 
     the preferences for living within one's own home or living 
     with one's own family and becoming productive members of the 
     community.
       (5) The goals of the Nation properly include providing 
     individuals with disabilities with--
       (A) a meaningful choice of receiving long-term services and 
     supports in the most integrated setting appropriate;
       (B) the greatest possible control over the services 
     received; and
       (C) quality services that maximize social functioning in 
     the home and community.
       (b) Purposes.--The purposes of this Act are as follows:
       (1) To provide that States shall offer community attendant 
     services and supports for eligible individuals with 
     disabilities.
       (2) To provide financial assistance to States to support 
     systems change initiatives that are designed to assist each 
     State in developing and enhancing a comprehensive consumer-
     responsive statewide system of long-term services and 
     supports that provides real consumer choice and direction 
     consistent with the principle that services and supports 
     should be provided in the most integrated setting appropriate 
     to meeting the unique needs of the individual.
       (c) Policy.--It is the policy of the United States that all 
     programs, projects, and activities receiving assistance under 
     this Act shall be carried out in a manner consistent with the 
     following principles:
       (1) Individuals with disabilities, or, as appropriate, 
     their representatives, must be empowered to exercise real 
     choice in selecting long-term services and supports that are 
     of high quality, cost-effective, and meet the unique needs of 
     the individual in the most integrated setting appropriate.
       (2) No individual should be forced into an institution to 
     receive services that can be effectively and efficiently 
     delivered in the home or community.
       (3) Federal and State policies, practices, and procedures 
     should facilitate and be responsive to, and not impede, an 
     individual's choice in selecting long-term services and 
     supports.
       (4) Individuals and their families receiving long-term 
     services and supports must be involved in decisionmaking 
     about their own care and be provided with sufficient 
     information to make informed choices.

     SEC. 3. COVERAGE OF COMMUNITY ATTENDANT SERVICES AND SUPPORTS 
                   UNDER THE MEDICAID PROGRAM.

       (a) Required Coverage for Individuals Entitled to Nursing 
     Facility Services or Eligible for Intermediate Care Facility 
     Services for the Mentally Retarded.--Section 1902(a)(10)(D) 
     of the Social Security Act (42 U.S.C. 1396a(a)(10)(D)) is 
     amended--
       (1) by inserting ``(i)'' after ``(D)'';
       (2) by adding ``and'' after the semicolon; and
       (3) by adding at the end the following:
       ``(ii) subject to section 1935, for the inclusion of 
     community attendant services and supports for any individual 
     who is eligible for medical assistance under the State plan 
     and with respect to whom there has been a determination that 
     the individual requires the level of care provided in a 
     nursing facility or an intermediate care facility for the 
     mentally retarded (whether or not coverage of such 
     intermediate care facility is provided under the State plan) 
     and who requires such community attendant services and 
     supports based on functional need and without regard to age 
     or disability;''.
       (b) Medicaid Coverage of Community Attendant Services and 
     Supports.--
       (1) In general.--Title XIX of the Social Security Act (42 
     U.S.C. 1396 et seq.) is amended--
       (A) by redesignating section 1935 as section 1936; and
       (B) by inserting after section 1934 the following:


              ``community attendant services and supports

       ``Sec. 1935. (a) Definitions.--In this title:
       ``(1) Community attendant services and supports.--
       ``(A) In general.--The term `community attendant services 
     and supports' means attendant services and supports furnished 
     to

[[Page S14639]]

     an individual, as needed, to assist in accomplishing 
     activities of daily living, instrumental activities of daily 
     living, and health-related functions through hands-on 
     assistance, supervision, or cueing--
       ``(i) under a plan of services and supports that is based 
     on an assessment of functional need and that is agreed to by 
     the individual or, as appropriate, the individual's 
     representative;
       ``(ii) in a home or community setting, which may include a 
     school, workplace, or recreation or religious facility, but 
     does not include a nursing facility, an intermediate care 
     facility for the mentally retarded, or other congregate 
     facility;
       ``(iii) under an agency-provider model or other model (as 
     defined in paragraph (2)(C)); and
       ``(iv) the furnishing of which is selected, managed, and 
     dismissed by the individual, or, as appropriate, with 
     assistance from the individual's representative.
       ``(B) Included services and supports.--Such term includes--
       ``(i) tasks necessary to assist an individual in 
     accomplishing activities of daily living, instrumental 
     activities of daily living, and health-related functions;
       ``(ii) acquisition, maintenance, and enhancement of skills 
     necessary for the individual to accomplish activities of 
     daily living, instrumental activities of daily living, and 
     health-related functions;
       ``(iii) backup systems or mechanisms (such as the use of 
     beepers) to ensure continuity of services and supports; and
       ``(iv) voluntary training on how to select, manage, and 
     dismiss attendants.
       ``(C) Excluded services and supports.--Subject to 
     subparagraph (D), such term does not include--
       ``(i) provision of room and board for the individual;
       ``(ii) special education and related services provided 
     under the Individuals with Disabilities Education Act and 
     vocational rehabilitation services provided under the 
     Rehabilitation Act of 1973;
       ``(iii) assistive technology devices and assistive 
     technology services;
       ``(iv) durable medical equipment; or
       ``(v) home modifications.
       ``(D) Flexibility in transition to community-based home 
     setting.--Such term may include expenditures for transitional 
     costs, such as rent and utility deposits, first months's rent 
     and utilities, bedding, basic kitchen supplies, and other 
     necessities required for an individual to make the transition 
     from a nursing facility or intermediate care facility for the 
     mentally retarded to a community-based home setting where the 
     individual resides.
       ``(2) Additional definitions.--
       ``(A) Activities of daily living.--The term `activities of 
     daily living' includes eating, toileting, grooming, dressing, 
     bathing, and transferring.
       ``(B) Consumer directed.--The term `consumer directed' 
     means a method of providing services and supports that allow 
     the individual, or where appropriate, the individual's 
     representative, maximum control of the community attendant 
     services and supports, regardless of who acts as the employer 
     of record.
       ``(C) Delivery models.--
       ``(i) Agency-provider model.--The term `agency-provider 
     model' means, with respect to the provision of community 
     attendant services and supports for an individual, a method 
     of providing consumer-directed services and supports under 
     which entities contract for the provision of such services 
     and supports.
       ``(ii) Other models.--The term `other models' means 
     methods, other than an agency-provider model, for the 
     provision of consumer-directed services and supports. Such 
     models may include the provision of vouchers, direct cash 
     payments, or use of a fiscal agent to assist in obtaining 
     services.
       ``(D) Health-related functions.--The term `health-related 
     functions' means functions that can be delegated or assigned 
     by licensed health-care professionals under State law to be 
     performed by an attendant.
       ``(E) Instrumental activities of daily living.--The term 
     `instrumental activities of daily living' includes meal 
     planning and preparation, managing finances, shopping for 
     food, clothing and other essential items, performing 
     essential household chores, communicating by phone and other 
     media, and getting around and participating in the community.
       ``(F) Individual's representative.--The term `individual's 
     representative' means a parent, a family member, a guardian, 
     an advocate, or an authorized representative of an 
     individual.
       ``(b) Limitation on Amounts of Expenditures under this 
     Title.--In carrying out section 1902(a)(10)(D)(ii), a State 
     shall permit an individual who has a level of severity of 
     physical or mental impairment that entitles such individual 
     to medical assistance with respect to nursing facility 
     services or qualifies the individual for intermediate care 
     facility services for the mentally retarded to choose to 
     receive medical assistance for community attendant services 
     and supports (rather than medical assistance for such 
     institutional services and supports), in the most integrated 
     setting appropriate to the needs of the individual, so long 
     as the aggregate amount of the Federal expenditures for 
     community attendant services and supports for all such 
     individuals in a fiscal year does not exceed the total that 
     would have been expended for such individuals to receive such 
     institutional services and supports in the year.
       ``(c) Maintenance of Effort.--With respect to a fiscal year 
     quarter, no Federal funds may be paid to a State for medical 
     assistance provided to individuals described in section 
     1902(a)(10)(D)(ii) for such fiscal year quarter if the 
     Secretary determines that the total of the State expenditures 
     for programs to enable such individuals with disabilities to 
     receive community attendant services and supports (or 
     services and supports that are similar to such services and 
     supports) under other provisions of this title for the 
     preceding fiscal year quarter is less than the total of such 
     expenditures for the same fiscal year quarter for the 
     preceding fiscal year.
       ``(d) State Quality Assurance Program.--In order to 
     continue to receive Federal financial participation for 
     providing community attendant services and supports under 
     this section, a State shall, at a minimum, establish and 
     maintain a quality assurance program that provides for the 
     following:
       ``(1) The State shall establish requirements, as 
     appropriate, for agency-based and other models that include--
       ``(A) minimum qualifications and training requirements, as 
     appropriate for agency-based and other models;
       ``(B) financial operating standards; and
       ``(C) an appeals procedure for eligibility denials and a 
     procedure for resolving disagreements over the terms of an 
     individualized plan.
       ``(2) The State shall modify the quality assurance program, 
     where appropriate, to maximize consumer independence and 
     consumer direction in both agency-provided and other models.
       ``(3) The State shall provide a system that allows for the 
     external monitoring of the quality of services by entities 
     consisting of consumers and their representatives, disability 
     organizations, providers, family, members of the community, 
     and others.
       ``(4) The State provides ongoing monitoring of the health 
     and well-being of each recipient.
       ``(5) The State shall require that quality assurance 
     mechanisms appropriate for the individual should be included 
     in the individual's written plan.
       ``(6) The State shall establish a process for mandatory 
     reporting, investigation, and resolution of allegations of 
     neglect, abuse, or exploitation.
       ``(7) The State shall obtain meaningful consumer input, 
     including consumer surveys, that measure the extent to which 
     a participant receives the services and supports described in 
     the individual's plan and the participant's satisfaction with 
     such services and supports.
       ``(8) The State shall make available to the public the 
     findings of the quality assurance program.
       ``(9) The State shall establish an on-going public process 
     for the development, implementation, and review of the 
     State's quality assurance program.
       ``(10) The State shall develop and implement a program of 
     sanctions.
       ``(e) Federal Role in Quality Assurance.--The Secretary 
     shall conduct a periodic sample review of outcomes for 
     individuals based upon the individual's plan of support and 
     based upon the quality assurance program of the State. The 
     Secretary may conduct targeted reviews upon receipt of 
     allegations of neglect, abuse, or exploitation. The Secretary 
     shall develop guidelines for States to use in developing 
     sanctions.
       ``(f) Requirement to Expand Eligibility.--Effective October 
     1, 2000, a State may not exercise the option of coverage of 
     individuals under section 1902(a)(10)(A)(ii)(V) without 
     providing coverage under section 1902(a)(10)(A)(ii)(VI).
       ``(g) Report on Impact of Section.--The Secretary shall 
     submit to Congress periodic reports on the impact of this 
     section on beneficiaries, States, and the Federal 
     Government.''.
       (c) Inclusion in Optional Eligibility Classification.--
     Section 1902(a)(10)(A)(ii)(VI) of the Social Security Act (42 
     U.S.C. 1396a(a)(10)(A)(ii)(VI)) is amended by inserting ``or 
     community attendant services and supports described in 
     section 1935'' after ``section 1915'' each place such term 
     appears.
       (d) Coverage as Medical Assistance.--
       (1) In general.--Section 1905(a) of the Social Security Act 
     (42 U.S.C. 1396d) is amended--
       (A) by striking ``and'' at the end of paragraph (26);
       (B) by redesignating paragraph (27) as paragraph (28); and
       (C) by inserting after paragraph (26) the following:
       ``(27) community attendant services and supports (to the 
     extent allowed and as defined in section 1935); and''.
       (2) Conforming amendments.--
       (A) Section 1902(j) of the Social Security Act (42 U.S.C. 
     1396a(j)) is amended by striking ``of of'' and inserting 
     ``of''.
       (B) Section 1902(a)(10)(C)(iv) of the Social Security Act 
     (42 U.S.C. 1396a(a)(10)(C)(iv)) is amended by inserting ``and 
     (27)'' after ``(24)''.

     SEC. 4. GRANTS TO DEVELOP AND ESTABLISH REAL CHOICE SYSTEMS 
                   CHANGE INITIATIVES.

       (a) Establishment.--
       (1) In general.--The Secretary of Health and Human Services 
     (referred to in this section as the ``Secretary'') shall 
     award grants described in subsection (b) to States to support 
     real choice systems change initiatives

[[Page S14640]]

     that establish specific action steps and specific timetables 
     to provide consumer-responsive long term services and 
     supports to eligible individuals in the most integrated 
     setting appropriate based on the unique strengths and needs 
     of the individual and the priorities and concerns of the 
     individual (or, as appropriate, the individual's 
     representative).
       (2) Eligibility.--To be eligible for a grant under this 
     section, a State shall--
       (A) establish the Consumer Task Force in accordance with 
     subsection (d); and
       (B) submit an application at such time, in such manner, and 
     containing such information as the Secretary may determine. 
     The application shall be jointly developed and signed by the 
     designated State official and the chairperson of such Task 
     Force, acting on behalf of and at the direction of the Task 
     Force.
       (3) Definition of state.--In this section, the term 
     ``State'' means each of the 50 States, the District of 
     Columbia, Puerto Rico, Guam, the United States Virgin 
     Islands, American Samoa, and the Commonwealth of the Northern 
     Mariana Islands.
       (b) Grants for Real Choice Systems Change Initiatives.--
       (1) In general.--From funds appropriated under subsection 
     (f), the Secretary shall award grants to States to--
       (A) support the establishment, implementation, and 
     operation of the State real choice systems change initiatives 
     described in subsection (a); and
       (B) conduct outreach campaigns regarding the existence of 
     such initiatives.
       (2) Determination of awards; state allotments.--The 
     Secretary shall develop a formula for the distribution of 
     funds to States for each fiscal year under subsection (a). 
     Such formula shall give preference to States that have a 
     relatively higher proportion of long-term services and 
     supports furnished to individuals in an institutional setting 
     but who have a plan described in an application submitted 
     under subsection (a)(2).
       (c) Authorized Activities.--A State that receives a grant 
     under this section shall use the funds made available through 
     the grant to accomplish the purposes described in subsection 
     (a) and, in accomplishing such purposes, may carry out any of 
     the following systems change activities:
       (1) Needs assessment and data gathering.--The State may use 
     funds to conduct a statewide needs assessment that may be 
     based on data in existence on the date on which the 
     assessment is initiated and may include information about the 
     number of individuals within the State who are receiving 
     long-term services and supports in unnecessarily segregated 
     settings, the nature and extent to which current programs 
     respond to the preferences of individuals with disabilities 
     to receive services in home and community-based settings as 
     well as in institutional settings, and the expected change in 
     demand for services provided in home and community settings 
     as well as institutional settings.
       (2) Institutional bias.--The State may use funds to 
     identify, develop, and implement strategies for modifying 
     policies, practices, and procedures that unnecessarily bias 
     the provision of long-term services and supports toward 
     institutional settings and away from home and community-based 
     settings, including policies, practices, and procedures 
     governing statewideness, comparability in amount, duration, 
     and scope of services, financial eligibility, individualized 
     functional assessments and screenings (including individual 
     and family involvement), and knowledge about service options.
       (3) Over medicalization of services.--The State may use 
     funds to identify, develop, and implement strategies for 
     modifying policies, practices, and procedures that 
     unnecessarily bias the provision of long-term services and 
     supports by health care professionals to the extent that 
     quality services and supports can be provided by other 
     qualified individuals, including policies, practices, and 
     procedures governing service authorization, case management, 
     and service coordination, service delivery options, quality 
     controls, and supervision and training.
       (4) Interagency coordination; single point of entry.--The 
     State may support activities to identify and coordinate 
     Federal and State policies, resources, and services, relating 
     to the provision of long-term services and supports, 
     including the convening of interagency work groups and the 
     entering into of interagency agreements that provide for a 
     single point of entry and the design and implementation of a 
     coordinated screening and assessment system for all persons 
     eligible for long-term services and supports.
       (5) Training and technical assistance.--The State may carry 
     out directly, or may provide support to a public or private 
     entity to carry out training and technical assistance 
     activities that are provided for individuals with 
     disabilities, and, as appropriate, their representatives, 
     attendants, and other personnel (including professionals, 
     paraprofessionals, volunteers, and other members of the 
     community).
       (6) Public awareness.--The State may support a public 
     awareness program that is designed to provide information 
     relating to the availability of choices available to 
     individuals with disabilities for receiving long-term 
     services and support in the most integrated setting 
     appropriate.
       (7) Downsizing of large institutions.--The State may use 
     funds to support the per capita increased fixed costs in 
     institutional settings directly related to the movement of 
     individuals with disabilities out of specific facilities and 
     into community-based settings.
       (8) Transitional costs.--The State may use funds to provide 
     transitional costs described in section 1935(a)(1)(D) of the 
     Social Security Act, as added by this Act.
       (9) Task force.--The State may use funds to support the 
     operation of the Consumer Task Force established under 
     subsection (d).
       (10) Demonstrations of new approaches.--The State may use 
     funds to conduct, on a time-limited basis, the demonstration 
     of new approaches to accomplishing the purposes described in 
     subsection (a).
       (11) Other activities.--The State may use funds for any 
     systems change activities that are not described in any of 
     the preceding paragraphs of this subsection and that are 
     necessary for developing, implementing, or evaluating the 
     comprehensive statewide system of long term services and 
     supports.
       (d) Consumer Task Force.--
       (1) Establishment and duties.--To be eligible to receive a 
     grant under this section, each State shall establish a 
     Consumer Task Force (referred to in this section as the 
     ``Task Force'') to assist the State in the development, 
     implementation, and evaluation of real choice systems change 
     initiatives.
       (2) Appointment.--Members of the Task Force shall be 
     appointed by the Chief Executive Officer of the State in 
     accordance with the requirements of paragraph (3), after the 
     solicitation of recommendations from representatives of 
     organizations representing a broad range of individuals with 
     disabilities and organizations interested in individuals with 
     disabilities.
       (3) Composition.--
       (A) In general.--The Task Force shall represent a broad 
     range of individuals with disabilities from diverse 
     backgrounds and shall include representatives from 
     Developmental Disabilities Councils, State Independent Living 
     Councils, Commissions on Aging, organizations that provide 
     services to individuals with disabilities and consumers of 
     long-term services and supports.
       (B) Individuals with disabilities.--A majority of the 
     members of the Task Force shall be individuals with 
     disabilities or the representatives of such individuals.
       (C) Limitation.--The Task Force shall not include employees 
     of any State agency providing services to individuals with 
     disabilities other than employees of agencies described in 
     the Developmental Disabilities Assistance and Bill of Rights 
     Act (42 U.S.C. 6000 et seq.).
       (e) Availability of Funds.--
       (1) Funds allotted to states.--Funds allotted to a State 
     under a grant made under this section for a fiscal year shall 
     remain available until expended.
       (2) Funds not allotted to states.--Funds not allotted to 
     States in the fiscal year for which they are appropriated 
     shall remain available in succeeding fiscal years for 
     allotment by the Secretary using the allotment formula 
     established by the Secretary under subsection (b)(2).
       (f) Annual Report.--A State that receives a grant under 
     this section shall submit an annual report to the Secretary 
     on the use of funds provided under the grant. Each report 
     shall include the percentage increase in the number of 
     eligible individuals in the State who receive long-term 
     services and supports in the most integrated setting 
     appropriate, including through community attendant services 
     and supports and other community-based settings.
       (g) Appropriation.--Out of any funds in the Treasury not 
     otherwise appropriated, there is authorized to be 
     appropriated and there is appropriated to make grants under 
     this section for--
       (1) fiscal year 2001, $25,000,000; and
       (2) for fiscal year 2002 and each fiscal year thereafter, 
     such sums as may be necessary to carry out this section.

     SEC. 5. STATE OPTION FOR ELIGIBILITY FOR INDIVIDUALS.

       (a) In General.--Section 1903(f) of the Social Security Act 
     (42 U.S.C. 1396b(f)) is amended--
       (1) in paragraph (4)(C), by inserting ``subject to 
     paragraph (5),'' after ``does not exceed'', and
       (2) by adding at the end the following:
       ``(5)(A) A State may waive the income, resources, and 
     deeming limitations described in paragraph (4)(C) in such 
     cases as the State finds the potential for employment 
     opportunities would be enhanced through the provision of 
     medical assistance for community attendant services and 
     supports in accordance with section 1935.
       ``(B) In the case of an individual who is eligible for 
     medical assistance described in subparagraph (A) only as a 
     result of the application of such subparagraph, the State 
     may, notwithstanding section 1916(b), impose a premium based 
     on a sliding scale related to income.''.
       (b) Effective Date.--The amendments made by subsection (a) 
     shall apply to medical assistance provided for community 
     attendant services and supports described in section 1935 of 
     the Social Security Act furnished on or after October 1, 
     2000.

     SEC. 6. STUDIES AND REPORTS.

       (a) Review of, and Report on, Regulations.--The National 
     Council on Disability established under title IV of the 
     Rehabilitation Act of 1973 (29 U.S.C. 780 et seq.) shall 
     review regulations in existence under title XIX of the Social 
     Security Act (42 U.S.C. 1396 et seq.) on the date of 
     enactment of this Act insofar as such regulations regulate 
     the provision of home health services, personal care

[[Page S14641]]

     services, and other services in home and community-based 
     settings and, not later than 1 year after such date, submit a 
     report to Congress on the results of such study, together 
     with any recommendations for legislation that the Council 
     determines to be appropriate as a result of the study.
       (b) Report on Reduced Title XIX Expenditures.--Not later 
     than 1 year after the date of enactment of this Act, the 
     Secretary of Health and Human Services shall submit to 
     Congress a report on how expenditures under the medicaid 
     program under title XIX of the Social Security Act (42 U.S.C. 
     1396 et seq.) can be reduced by the furnishing of community 
     attendant services and supports in accordance with section 
     1935 of such Act (as added by section 3 of this Act).

     SEC. 7. TASK FORCE ON FINANCING OF LONG-TERM CARE SERVICES.

       The Secretary of Health and Human Services shall establish 
     a task force to examine appropriate methods for financing 
     long-term services and supports. The task force shall include 
     significant representation of individuals (and 
     representatives of individuals) who receive such services and 
     supports.
                                  ____

                                               National Council on


                                           Independent Living,

                                 Arlington, VA, November 15, 1999.
     Hon. Tom Harkin,
     U.S. Senate, Washington, DC.
       Dear Senator Harkin, The National Council on Independent 
     Living (NCIL) applauds your leadership in introducing the 
     Medicaid Community Attendant Services and Supports Act 
     (MiCASSA).
       NCIL is the national membership organization for centers 
     for independent living and people with disabilities. Our 
     membership includes individuals and organizations from each 
     of the 50 states. As a leading national, cross-disability, 
     grassroots organization run by and for people with 
     disabilities, NCIL has been instrumental in efforts to 
     advance the rights and opportunities for all Americans with 
     disabilities.
       The members of NCIL have wholeheartedly endorsed MiCASSA, 
     have selected its passage as one of our top priorities. We 
     join with our colleagues from ADAPT, who are leading the 
     national effort to pass MiCASSA. There is nothing more 
     important to our members than real choice for people with 
     disabilities. Passage of MiCASSA will create the critical 
     systems change needed for people with disabilities to enjoy 
     the freedom of real choice in services and supports. This 
     will allow people with disabilities to finally enjoy their 
     civil right to live in their own homes, free from isolation 
     and segregation in nursing homes and institutions.
       We thank you for your vision and for your willingness to 
     lead the effort to achieve freedom for our people. You can 
     count on NCIL to work alongside you as we give our finest 
     efforts towards passage of MiCASSA at the very beginning of 
     the new millennium.
           Sincerely Yours,
     Paul Spooner,
       President.
     Mike Oxford,
     Vice President and Chair, Personal Assistance Services Sub-
     Committee.
                                  ____

                                       The Association of Programs


                                 for Rural independent Living,

                                      Kent, OH, November 12, 1999.
     Senator Tom Harkin, Iowa,
     U.S. Senate, Washington, DC.
       Dear Honorable Senator, It is my understanding that the 
     Community Attendant Services and Support Act (MiCASA) is 
     about to be introduced by you, into Congress on Monday, 
     November 15, 1999. On behalf of the Governing Board of the 
     Association of Programs for Rural Independent Living (APRIL) 
     I want to wholeheartedly endorse your efforts to pass this 
     important piece of legislation.
       APRIL is a national network of over 150 members, primarily 
     rural centers for independent living (CILs), CIL satellite 
     offices and statewide independent living councils (SILCs), as 
     well as other related organizations and individuals concerned 
     about people with disabilities living and working in Rural 
     America. We are a nonprofit group, who for the past twelve 
     years, has continued to grow in both numbers and in our 
     efforts to bring to light the myriad of issues facing our 
     rural constituents. Our membership in turn, represents 
     thousands of consumers, many of whom still remain confined to 
     rooms in their homes, or in institutions due to lack of 
     community supports.
       MiCASA is a Bill that has been long in coming and APRIL has 
     joined with it's national colleagues throughout the years to 
     urge that such a consumer-directed, community-based model of 
     attendant services and support be implemented throughout the 
     United States. Let's hope that as the new millennium draws 
     near, that mandatory institutionalization will be 
     unnecessary, and that the long-standing bias toward these 
     institutions will have ended.
       As you well know, coming from the rural state of Iowa, 
     there are too many barriers for people with disabilities--
     from lack of transportation, housing, job opportunities, 
     personal attendants, financial resources, community access 
     and outdated, limiting attitudes. All these obstacles are 
     compounded in the isolation of rural America. The passage of 
     MiCASA would eliminate of one of the greatest barriers that 
     people face. Your record of supporting the rights of our 
     people, is solid. Our continued support of you and your 
     efforts is assured. Please let us know, as the legislation 
     begins it's journey towards passage, how we may help assure 
     it's success.
       As always, our thanks to ADAPT and the others who work so 
     steadfastly on our behalf.
                                                   Linda Gonzales,
     National Coordinator.
                                  ____



                                Paralyzed Veterans of America,

                                Washington, DC, November 16, 1999.
     Hon. Tom Harkin,
     Senate Office Building, Washington, DC.
       Dear Senator Harkin: On behalf of the Paralyzed Veterans of 
     America (PVA), I want to thank you for introducing ``The 
     Medicaid Community Attendant Services and Supports Act of 
     1999.'' This bill will allow qualified individuals with 
     disabilities the option of receiving long term services and 
     supports including personal assistant services in a home and 
     community based settings rather than in institutions.
       PVA has been a long time advocate for consumer-directed 
     personal assistant services (PAS). Attendants providing PAS 
     perform activities of daily living (ADLs) for people with 
     disabilities including feeding, bathing, toileting, dressing, 
     and transferring. With PAS, many PVA members and thousands of 
     people with disabilities across the country are able to live 
     independent and active lives at home or in a community 
     setting.
       Historically, long term services for people with 
     disabilities have been provided in nursing homes and in 
     institutional settings. However, your bill will provide funds 
     to States to support systems change initiatives that are 
     designed to assist each State in developing a comprehensive 
     consumer responsive state wide system of long term services 
     and supports that will provide real consumer choice and 
     direct in an integrated setting appropriate to the needs of 
     the individual.
       PVA has long recognized that disability is a natural part 
     of life. People with disabilities have the right to live 
     independently, enjoy self-determination, make independent 
     choices, contribute to society and enjoy full inclusion and 
     integration into the mainstream of American society. This 
     legislation will help advance this cause and PVA stands ready 
     and willing to work with you and your staff to ensure passage 
     of the Medicaid Community Attendant Services and Supports Act 
     of 1999.
           Sincerely,
                                                John C. Bollinger,
     Deputy Executive Director.
                                  ____



                                                      The Arc,

                                 Arlington, TX, November 16, 1999.
     Hon. Thomas Harkin,
     Hon. Arlen Specter,
     U.S. Senate, Washington, DC.
       Dear Senators Harkin and Specter: On behalf of The Arc of 
     the United States, I wish to express our strong support for 
     introducing the Medicaid Community Attendant Services and 
     Supports Act (MiCASSA). MiCASSA represents an important step 
     in reforming our long-term care policy by helping to reduce 
     the institutional bias in our long-term care services system. 
     By doing so, MiCASSA would help individuals with mental 
     retardation live quality lives in the community.
       Created over thirty years ago, our long-term care service 
     system is funded mainly by Medicare and Medicaid dollars. 
     Today, over 75 percent of Medicaid long-term care dollars are 
     spent on institutional services, leaving few dollars for 
     community-based services. A national long-term service policy 
     should not favor institutions over home and community-based 
     services. It should allow families and individuals real 
     choice regarding where and how services should be delivered.
       People with mental retardation want to live, work and play 
     in the community. MiCASSA would help keep families together 
     and would prevent people with mental retardation from being 
     unnecessarily institutionalized. Community services have also 
     shown on average to be less expensive than institutional 
     services.
       MiCASSA complements the 1999 Supreme Court decision in 
     Olmstead, by providing a way for states to meet their 
     obligations under the decision. It would also help reduce the 
     interminable waiting lists for community-based services and 
     supports.
       The Arc of the Untied States, the largest national 
     voluntary organization devoted solely to the welfare of 
     people with mental retardation and their families, stands 
     ready to assist you in any way to move this important piece 
     of legislation.
           Sincerely,
                                                      Brenda Doss,
     President.
                                  ____



                                             Justin Dart, Jr.,

                                Washington, DC, November 16, 1999.
     Hon. Tom Harkin,
     U.S. Senator, Senate Hart Office Building, Washington, DC.
       Dear Senator Harkin: I know that the great majority of 54 
     million Americans with disabilities join me in congratulating 
     you and Senator Spector on introducing the Medicaid Community 
     Attendant Services and Supports Act of 1999.
       The passage of this law will be a landmark progress for 
     free-enterprise democracy. It will pave the way for 
     liberating hundreds of thousands of Americans from 
     institutions by providing the simple services they need to 
     live in their homes and participate in their communities.

[[Page S14642]]

       I urge every member of Congress to support this historic 
     legislation.
           Sincerely,
                                                      Justin Dart,
     Justice For All.
                                  ____

                                              National Spinal Cord


                                           Injury Association,

                             Silver Spring, MD, November 16, 1999.
     Hon. Tom Harkin,
     U.S. Senate, Washington, DC.
       Dear Senator Harkin: The National Spinal Cord Injury 
     Association (NSCIA) joins our colleagues from the National 
     Council on Independent Living and ADAPT in thanking you for 
     your leadership in introducing the Medicaid Community 
     Attendant Services and Support Act (MiCASSA).
       This bill, when passed, will make a significant difference 
     in the lives of the 600,000 people with spinal cord injury 
     and disease in the United States, many of whom are currently 
     forced to choose institutional and nursing home services when 
     what they really need are personal assistance services. It 
     has been demonstrated repeatedly that community-based 
     services are better, more cost effective and preferred.
       We thank you for your support for people living with spinal 
     cord injury and disease and for your willingness to lead the 
     effort to offer real choices for people with disabilities. 
     You can count on NSCIA's support in the effort to pass 
     MiCASSA.
           Sincerely Yours,
                                           Thomas H. Countee, Jr.,
                                               Executive Director.

 Mr. SPECTER. Mr. President, I have sought recognition to join 
Senator Tom Harkin, my colleague and distinguished ranking member of 
the Appropriations Subcommittee on Labor, Health and Human Services and 
Education, which I chair, in introducing the Medicaid Attendant Care 
Services and Supports Act of 1999. This creative proposal addresses a 
glaring gap in Federal health coverage, and assists one of our Nation's 
most vulnerable populations, persons with disabilities. I would also 
note that a similar version on this bill was included in the Health 
Care Assurance Act of 1999 (S. 24), which I introduced on January 19, 
1999.
  In an effort to improve the delivery of care and the comfort of those 
with long-term disabilities, this vital legislation would allow for 
reimbursement for community-based attendant care services, in lieu of 
institutionalization, for eligible individuals who require such 
services based on functional need, without regard to the individual's 
age or the nature of the disability. The most recent data available 
tell us that 5.9 million individuals receive care for disabilities 
under the Medicaid program. The number of disabled who are not 
currently enrolled in the program who would apply for this improved 
benefit is not easily counted, but would likely be substantial given 
the preference of home and community-based care over institutional 
care.
  Under this proposal, States may apply for grants for assistance in 
implementing ``systems change'' initiatives, in order to eliminate the 
institutional bias in their current policies and for needs assessment 
activities. Further, if a state can show that the aggregate amounts of 
Federal expenditures on people living in the community exceeds what 
would have been spent on the same people had they been in nursing 
homes, the state can limit the program, perhaps by not letting any more 
people apply; no limiting mechanism is mandated under this bill. And 
finally, States would be required to maintain expenditures for 
attendant care services under other Medicaid community-based programs, 
thereby preventing the states from shifting patients into the new 
benefit proposed under this bill.
  Let me speak briefly about why such a change in Medicaid law is so 
desperately needed. Only a few short months ago, the Supreme Court held 
in Olmstead v. L.C., 119 S. Ct. 2176 (1999), that the Americans with 
Disabilities Act (ADA) requires States, under some circumstances, to 
provide community-based treatment to persons with mental disabilities 
rather than placing them in institutions. This decision and several 
lower court decisions have pointed to the need for a structured 
Medicaid attendant-care services benefit in order to meet obligations 
under the ADA. Disability advocates strongly support this legislation, 
arguing that the lack of Medicaid communty-based services options is 
discriminatory and unhealthful for disabled individuals. Virtually 
every major disability advocacy group supports this bill, including 
ADAPT, the Arc, the National Council on Independent Living, Paralyzed 
Veterans of America, and the National Spinal Cord Injury Association.
  Senator Harkin and I recognize that such a shift in the Medicaid 
program is a huge undertaking--but feel that it is a vitally important 
one. We are introducing this legislation today in an attempt to move 
ahead with the consideration of crucial disability legislation and to 
provide a starting point for debate. Mr. President, the time has come 
for concerted action in this arena.
  I urge the congressional leadership, including the appropriate 
committee chairmen, to move forward in considering this legislation, 
and take the significant next step forward in achieving the objective 
of providing individuals with disabilities the freedom to live in their 
own communities.
                                 ______