NCIL - The National Council on Independent Living

The institutional bias of the federal and state governments forces people out of their homes and communities and into institutions; the federal and state institutional bias must be reversed. The US Supreme Court Olmstead v. L.C. decision of 1999 affirmed the right of individuals with disabilities to live in their communities based on Title II of the Americans with Disabilities Act (ADA). To deny individuals with disabilities the option of living in their communities is a civil rights violation.
In the Americans with Disabilities Act of 1990 (ADA), Congress described the isolation and segregation of individuals with disabilities as a serious and pervasive form of discrimination. 42 U.S.C. § 12101(a)(2), (5). Title II of the ADA, which proscribes discrimination in the provision of public services, specifies, inter alia, that no qualified individual with a disability shall, “by reason of such disability,” be excluded from participation in, or be denied the benefits of, a public entity’s services, programs, or activities. §12132. Congress instructed the Attorney General to issue regulations implementing Title II’s discrimination proscription. See §12134(a). One such regulation, known as the “integration regulation,” requires a “public entity [to] administer … programs … in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” 28 CFR § 35.130(d). A further prescription, here called the “reasonable-modifications regulation,” requires public entities to “make reasonable modifications” to avoid “discrimination on the basis of disability,” but does not require measures that would “fundamentally alter” the nature of the entity’s programs. §35.130(b)(7).

The National Council on Independent Living (NCIL) is the only grassroots national organization run by and for people with disabilities. The NCIL has established itself as The National Voice of the Independent Living Movement, Centers for Independent Living (CILs), and people with disabilities who are leading the disability rights movement.

Centers for Independent Living are community based, cross disability, consumer controlled, non-residential, non-profit corporations, which are governed and controlled by people with different types of disabilities. CILs provide at least four core services to a cross disability population: individual and systems advocacy, information and referral, independent living skills training, and peer counseling. There are more than 334 consumer controlled CILs in the United States today.

NCIL, along with other national disability-related organizations including American Disabled for Attendant Programs Today (ADAPT), the World Institute on Disability (WID), and the Consortium for Citizens with Disabilities on Disability (CCD), has been at the forefront in promoting the adoption of a national policy to establish a national Personal Assistance services (PAS) program.

NCIL and other groups committed to a national PAS program are firm in the belief that a national PAS program should have substantial input and influence from consumers of the service at the governance level and that a national PAS program should be consumer directed and controlled to facilitate the full implementation of the vision of the Americans with Disabilities Act of 1990.

Approximately 5.4 million American adults living outside an institution require some assistance form another person with daily living tasks such as dressing, eating, toileting, housekeeping, remembering to take medications, balancing a checkbook, and other everyday activities. There are 2.7 million people needing such assistance have unmet needs.

While progress is slowly being made to change institutional bias, national long-term services policy remains firmly biased in favor of institutionalizing people who need such assistance rather than assisting them in their own homes and/or communities. This bias is reflected in the fact that 72% of the $82.13 billion spent on long term care services goes to institutional services, while only 28% funds community services and supports.

Analysis estimates of 2002 costs, HCBS waivers produced a national average public saving of $43,947 per participant when comparing expenditures between Medicaid HCBS waivers and institutional care.

In 2001, ‘The New Freedom Initiative’ (NFI) was announced as a cross-governmental policy and funding initiative to remove barriers to community living for people with disabilities and to support efforts to comply with the Americans with Disabilities Act (ADA). Later in 2001, an Executive Order outlined the Federal Government’s commitment to community-based alternatives to institutional care for all people with disabilities. Federal agencies were directed to work with states to ensure compliance with the ADA integration mandate that was reinforced by the Olmstead ruling.

CMS has encouraged states to rebalance long term care (LTC) systems and enable money to follow the person through grants to states as well as making policy changes, providing guidance and proposing legislation. Unfortunately, even with the resources, funding opportunities and technical assistance from CMS, many states have not made meaningful LTC system changes and the institutional bias remains prevalent. Many states that have applied for HCBS waivers have long waiting lists for PAS programs. State officials report many groups are not being served, such as traumatic brain injury, HIV/AIDS, or mental illness. The cost of unmet need for Medicaid HCBS is estimated at $1.9 billion for those living alone and $4.7 billion for those living with others.

Stereotyping attitudes on the part of many people who cannot conceive of people with disabilities living in the community with PAS, along with powerful lobbying efforts by the nursing home industry, contribute to the perpetuation of this institutional bias.

Ethics, federal law, Supreme Court rulings, federal policy, Presidential Executive Order, and fiscal responsibility dictate that home and community based services must be provided for Americans with all types of disabilities who wish to live in their homes and communities instead of an institution.

The NCIL asserts the institutional bias on the part of the federal government and state governments must be reversed and that people of all ages with all types of disabilities must have the option of obtaining assistance with daily living in their homes and communities through a national consumer controlled PAS program. Americans with all types of disabilities and all citizens of the United States deserve no less.

NCIL believes that a national PAS program must have certain characteristics to most effectively and efficiently meet the needs of people with disabilities in their home and communities.

NCIL believes a comprehensive range of services must be available for an effective, efficient PAS program. PAS, along with assistive technology such as wheelchairs, text readers, and hearing aids, enable people with disabilities to participate in activities at home, at work, and in the community. PAS is:

Personal services including, but not limited to, assistance with bathing and personal hygiene (including menstrual care), bowel and bladder care (including catheterization), dressing and grooming, transferring, eating, medications and injections, and operating respiratory equipment and other assistive devices.
Household services including, but not limited to, assistance with meal preparation, light and heavy cleaning, laundry, repairs, and maintenance.
Community services including, but not limited to, assistance with shopping, employment, education, participation in community and civic affairs, and leisure.
Cognitive services including, but not limited to, assistance with money management, scheduling, planning, cuing, decision-making.
Communication services including, but not limited to, interpreting, reading, and writing.
Mobility services in and out of the home including, but not limited to, escorting and driving.
Assistance with infant and childcare.
Security and safety-enhancing services including, but not limited to, assistance with monitoring alarms and arranging for periodic in person or telephone contacts.
Workplace task-related assistance including, but not limited to, readers, interpreters, help with lifting or reaching, and other help related to performing work tasks and may include personal care-related assistance such as toileting, eating, or drinking.

NCIL further believes that although many of these services do not meet the traditional definition of “medical necessity” and will not result in medical improvements to the disabling conditions, their provision is necessary for people with disabilities to maintain their health and to prevent secondary disabilities and illnesses.

Program Models

PAS users must be able to freely choose from a range of PAS program models from a voucher or direct cash payment model in which consumers totally manage their own PAS without medical supervision and the necessity of a burdensome, costly administrative structure to a contract agency model in which the agency assumes varying degrees of responsibility for managing the PAS.

The PAS user’s choice, direction and control in selecting, training, scheduling and supervising their Personal Assistant (s) must be maximized in all management options.
The PAS users choice, direction and control of administrative tasks including, but not limited to, determining pay rates, withholding taxes, and paying benefits must be maximized in all management options.
All models must be non-medical and community-based.
State issues such as Medical and Nursing Practices Acts and Personal Assistant Registry Acts must be resolved so that health related tasks such as medication dispensation and injection and catheterization can be performed by unlicensed Personal Assistants under the direct control and supervision of PAS users when that is the choice.

Coverage and Eligibility

NCIL believes that PAS coverage must extend to people of all ages with all types of disabilities including cognitive, sensory, mental and physical disabilities and that eligibility criteria must not discriminate based on age, type of disability and/or any other factor unrelated to need. NCIL’s position is that individuals must be eligible for a national PAS program if they experience a functional disability of a temporary or permanent nature resulting from injury, aging, disease or congenital condition which requires personal assistance services.

Eligibility criteria must be developed that do not exclude people based on age; type of disability; onset of disability such as congenital, injury, disease, or later age onset; and health, family status, race, national origin, cultural background, religion, gender, sexual preference and/or geography.
Eligibility criteria must not include disincentives for employment and/or marriage.
Eligibility must not be based on income factors although cost sharing is acceptable based on a sliding income scale (see the section on Financial Considerations below).
No person must be forced into or kept in an institution because of the denial of PAS.

Governance of a National PAS Program

NCIL believes that the views of PAS users must be paramount in the design, delivery, and evaluation of a national PAS program.

PAS users must be decisively and formally involved and represented at all levels of policy determination, planning, program design, and implementation of a national PAS program.
Any national and/or state governance mechanisms must include PAS users in substantial decision-making roles.
Any national PAS program that gives states the flexibility to plan, design, and implement state PAS programs must require each state to:
develop a long range three to five year plan to be updated annually which delineates the state’s PAS philosophy, program design, and implementation and evaluation plans, and
establish a policy board consisting of at least 51% PAS users with a broad range of disabilities which has the authority to approve or jointly modify the required state plan and updates jointly with the lead agency;
such policy boards must be independent of state agencies and must have adequate staff and budgets to carry out the assigned responsibilities.

NCIL believes that whatever national program design and funding mechanisms are employed, states should be required to adopt the definition and provide the basic services, program models, coverage and eligibility criteria, governance mechanisms, and grievance and appeal procedures cited in this position paper in order to provide uniform coverage for people with disabilities across the states. NCIL further believes that a gradual phase in of a PAS program would be desirable in order that a PAS infrastructure can be developed to meet the demand.

Financial Considerations

NCIL believes that financing mechanisms and regulations for a national PAS program should not in any way reflect a bias toward institutionalization and away from Home and Community Based Services.

Cost sharing and/or tax credits must be part of a national PAS plan based on a sliding scale relative to income, but with a cap on out-of-pocket consumer expenditures at a percentage of income and/or on tax credits. The families of children who receive PAS benefits must be treated the same as direct PAS users in terms of cost sharing and/or tax credits.
There must be no unfavorable differential federal match requirement relative to any other long-term service programs.
Any benefits, whether direct vouchers/cash or not, derived by PAS users must not be treated as disposable income nor counted as income for the determination of eligibility for other statutory benefits/services.
Federal and state governments must clarify tax withholding and personal assistant benefit requirements for PAS users and providers.
Long-term services insurance reform should be undertaken in conjunction with a national PAS program which addresses standardized benefits packages and the elimination of pre-existing condition exclusions.

No one who receives PAS benefits at the time of adoption of a national PAS program must lose the benefits they are receiving.

NCIL believes that a national PAS program must include a uniform appeal/grievance procedure independent of funders, providers, and assessors which has an expeditious time-line and which provides expenses for the use of advocates and/or legal counsel by PAS applicants/users or their families.