Independent Living Administration (ILA)

Independent Living Administration (ILA)

August 6, 2010

In the late 1960’s, the first Center for Independent Living (CIL) was created in Berkeley, California, by people with disabilities. Soon thereafter, other CILs began to grow across the country. Since then, CILs have educated the general public and advocated for equal rights and the inclusion of people with disabilities in all aspects of society. As CILs became part of the patchwork of service systems in this country, so too developed Independent Living Advisory Committees. With the passage of the 1992 Amendments to the Rehabilitation Act of 1973, Independent Living Advisory Committees were transformed into the Statewide Independent Living Councils (SILCs) -- consumer-controlled, governor appointed bodies that had joint responsibility with the designated state units for development and submission of the State Plan for Independent Living (SPIL), as well as the sole authority for monitoring the implementation of the SPIL The idea that individuals with disabilities are the best experts of their own needs spread across the country, and the independent living movement and philosophy became entrenched in the fabric of America.

Since the signing of the Rehabilitation Act of 1973, the Independent Living Program in America has served as the model of consumer control and empowerment, placing people with disabilities in control of systematically breaking attitudinal and institutional barriers. At present time, there are now 391 Centers for Independent Living, 56 Statewide Independent Living Councils, and 330 branch offices in America. While the Independent Living Program in America is strong and effective, it has been limited by a federal bureaucracy that has not done a reauthorization of the Rehabilitation Act for over 10 years in spite of numerous recommendations from NCIL and IL advocates. The relationship between the Rehabilitation Services Administration (RSA) and America’s CILs and SILCs has been tumultuous during that time. This can be attributed to narrow and indifferent interpretations of the Rehabilitation Act by RSA, as RSA recently decided to reinterpret the regulations in spite of almost 15 years of approving State Plans. NCIL feels it is time to not only do Reauthorization but to institute a series of structural changes that are a slight variation of the President’s proposed changes for the IL program within RSA.

The National Council on Independent Living (NCIL) developed guiding principles described within its position paper on the Reauthorization of the Rehabilitation Act that clearly demonstrate the broad positive impact independent living continues to have on service delivery systems. NCIL believes now is the time to move the independent living philosophy and consumer control to the federal level through the administration of the IL program by creating an Independent Living Administration (ILA). Establishing an Independent Living Administration will not only emphasize consumer control but also provide an opportunity to capitalize on a nationwide infrastructure made up of consumer-controlled entities including CILs and SILCs. Elevating the IL Program to an autonomous, independent, consumer-controlled administration that supports the national independent living network will enhance the opportunity to coordinate with many other federal programs that recognize the importance of consumer control. Creating the ILA will provide unique opportunities to capitalize on strategies for greater collaboration, build stronger partnerships between federal, state, and local partners and will provide for greater marketing opportunities, technical assistance, training, oversight, and monitoring. Consolidating all of Title VII funding to create one funding stream governed by the ILA will reduce duplication, provide the opportunity for greater oversight, be more cost effective with regard to administrative spending, and ensure that funding is provided directly to grantees and not lost in bureaucratic administrative oversight.

Recommendations for creating, strengthening and completing a nationwide infrastructure are as follows:

1. Elevate the ILP from its current subordinate role by establishing an autonomous, independent, consumer-controlled administration with the purpose of building the Independent Living Program at the federal level so that it can more effectively support the independent living network nationally. The infrastructure of the Independent Living Administration would be grounded in the independent living philosophy of consumer control so that the majority of people involved would be people with disabilities who have experience in independent living services;
   
   
2. The ILA must be comprised of no less than 51 percent people with disabilities who have demonstrated significant experience in independent living.
   
   
3. Create an Independent Living Administration Commission of individuals with disabilities who have experience in the independent living network throughout the country.
   
   
4. Ensure that other federal agencies will interact on a regular basis with the ILP on issues affecting people with disabilities;
   
   
5. The role of the designated state unit would be eliminated in states where federal funding exceeds the state contribution so that those funds will be directly allocated to the SILCs and CILs, and in states where the state contribution to the independent living program equals or exceeds the federal allocation, the role and function of the designated state unit will remain as currently defined;
   
   
6. Consolidate Title VII Chapter 1, Parts B and C, and Chapter 2 funding to create one funding stream for IL services, specifically for the CILs, and ensure that this funding stream is provided directly to grantees;
   
   
7. Create a minimum funding level for the general operations for SILCs in the amount of $250,000 that is made up of new and separate funding;
   
   
8. Increase minimum funding levels of CILs to $560,000 to include the fifth (5th) core service of transition from institutional settings, and
   
   
9. Update existing Title VII language to reflect the principles described in subsequent pages.

Specific Duties of the Independent Living Administration

1. Specific duties of the administration should include establishing minimum requirements for State Plans for Independent Living (SPILs), approving the SPIL, developing a due process (consistent with NCIL’s position paper) for denial of the SPILs that do not meet minimum requirements, and establishing indicators of minimum compliance for SILCs.
   
   
2. The administration shall also be responsible for conducting on-site compliance reviews consistent with standards and assurances and outcome measures for CILs and SILCs. Compliance reviews will be conducted no less than once every five (5) years for CILs and every three (3) years for SILCs. The administration will (in conjunction with NCIL) develop and publish in the Federal Register, the standards and indicators for SILCs no later than October 1, 2010. To promote best practices and quality assurances consistent with the standards and assurances, the administration will utilize a “peer review” process as a quality assurance indicator. The Administration may initiate contracts to appropriate entities that have significant, demonstrated experience in utilizing a peer review process of Independent Living programs. Individuals who carry out the peer review process will have a thorough knowledge on the provision of independent living services and will not be a government employee. They must have experience in the operation of CILs or SILCs, and shall be made up of teams of a minimum of five (5) individuals with demonstrated experience in CIL/SILC administration, fiscal, programmatic and other appropriate areas.
   
   
3. The Administration shall include a training and technical assistance division that provides information, training, and support on “best practices” and innovative approaches to providing IL services. This division will support and improve the Administration’s quality assurance and monitoring process. The Administration may subcontract with existing entities that demonstrate significant and efficient IL training and technical assistance experience.
   
   
4. Promoting the independent living philosophy on a statewide basis is a crucial component of the Administration’s responsibilities. The State Plan for Independent Living (SPIL) will be the document that coordinates federal funding to expand and improve independent living within each state. All existing Title VII funding (Chapter1, Parts B and C, and Chapter 2) should be accounted for and made available through the (SPIL). At a minimum, the SPIL should describe the existing network of CILs, identify unserved/underserved areas of the state, and propose a plan to address such areas, goals and objectives. The SILC and the CIL representative on the SILC board will have signatory authority over the SPIL. The SILC, in conjunction with the CILS shall have the responsibility of gathering public input, developing, implementing, and monitoring the SPIL.
   

Roles, Responsibilities and Funding of SILCs under the ILA

1. Due to the significance of coordinating funding on the state level to expand and improve the network of CILs, the SILC must take the appropriate and necessary steps, in accordance with state and federal law, to ensure that it remains autonomous from any conflict of interest. This includes not being structured or housed within any state agency, university or other state or federally funded organization and have fiduciary control. The SILC must also ensure it is consumer-controlled and that it is not overseeing or managing CILs. The SILC will have the authority and autonomy to provide leadership and support necessary to maximize the empowerment, independence, integration and full inclusion of all people with disabilities into the mainstream of society. It shall also have the authority necessary to conduct resource development activities, advocacy, research, planning, and any other duties the Council deems appropriate to implement and evaluate the SPIL.
   
   
2. The SILC shall have a minimum funding level of $250,000, or no less than the SILC’s existing operating budget for general operations. So as not to take away from vital services to individuals with disabilities, general operating funds shall be made up of new funds (separate from Parts B or C) and made available through contract to eligible SILCs that meet the standards and assurances for SILCs.
   
   
3. At least 60 percent of the members of the SILC will be people with significant disabilities. Members of the Council will be governor appointed or, in the case of a state that, under state law, vests authority for the administration of the activities carried out in this act with an entity other than the governor the chief officer of that entity. For example, the chief officer of one or more Houses of the State Legislature or an independent board in the state. The appointing authority will select members from among those candidates recommended by the SILC. In the event the governor elects not to make an appointment(s) and the SILC is at risk of being out of compliance, the SILC will have the authority to make appointment(s). No voting member of the Council may serve more than two consecutive full terms of three years.
   
   
4. There will be at a minimum one CIL designee serving on the SILC board. The CIL designee shall be selected by the CILs and not be subject to governor appointment.
   
   
5. Ex officio, nonvoting members will not be subject to governor appointment, term limits, nor count against the 60 percent majority of people with disabilities serving on the board. Other representatives from other state agencies that provide services for individuals with disabilities are eligible to serve on the SILC. Additional members may include individuals with disabilities, parents and/or guardians of individuals with disabilities, advocates of and for individuals with disabilities, other representatives from centers for independent living, representatives from private businesses, representatives from organizations that provide services for individuals with disabilities, and other appropriate individuals. The Chairperson of the SILC will be elected from among the voting membership.
   
   
6. The SILC will hold a minimum of four (4) regularly scheduled meetings per year and will ensure these are open to the public with necessary accommodations and that sufficient advance notice is provided.

Roles, Responsibilities and Funding of CILs under the ILA

1. A CIL that has been approved for funding, and continues to meet the standards and assurances, should have the assurance of continued funding through “grandfathering” CILs into statute.
   
   
2. Many states continue to struggle with the difficulty in not receiving an increase in federal funds because of the way in which the funding formula is currently written. The independent living community as a whole has agreed that the formula should be changed so that 50 percent of the total of all newly appropriated funds will be distributed equally among the states and territories. The remaining 50 percent should be divided among the states in an amount bearing the same ratio as the population of the state bears to the population of all states. This should be contingent upon the continuation of funding by the states equal to or exceeding the previous year’s level.
   
   
3. Overly restrictive interpretations of the Rehabilitation Act have meant that CILs have been unable to use their funds in a manner they deem efficient. Specifically, CILs must be allowed to carry-over funding from one year to the next when necessary.
   
   
4. Restrictive interpretations of the Rehabilitation Act by RSA have also been problematic in CILs’ and SILCs’ efforts to expand to new geographically unserved and underserved areas in their states. NCIL recommends allowing the establishment of satellite/branch offices within existing CIL catchment areas or unserved/underserved areas of the state when funding is not sufficient to start a new CIL. This would also include the ability for a CIL to expand their service region into counties unserved by any CIL in a given state.
   
   
5. Historically, CILs have long embraced the idea of providing “transition services” to people who wish to live in community-based settings. Many CILs have created programs with little or no funding, while some have taken a more sophisticated approach and have gone as far as creating “transitional housing.” Many factors play into the funding and/or sophistication of a CIL’s ability to provide a fifth (5th) core service. Some states have self-directed services that allow CILs to act as a fiscal intermediary, while others do not. Some states have state Independent Living appropriations; some do not. In spite of the varying approaches to transitioning, CILs should be provided with the tools and resources necessary to provide for transition. Therefore, it is estimated that a CIL should have a minimum funding amount of $560,000 to provide all five (5) proposed core services. The limitation of a CIL owning “transitional housing” should be revisited. It is universally agreed that this “policy” should be flexible; yet caution must be exercised. That said, increasing the limitation to 6 months is reasonable.