NCIL Testimony NCIL Regarding Funding for the Independent Living Program

Kelly Buckland, Executive Director
Idaho State Independent Living Council
Boise, Idaho 

March 13, 2008

House Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

on behalf of the National Council on Independent Living About Fiscal Year 2009 funding for the Independent Living Program of the Rehabilitation Act of 1973, as Amended (Title VII, Part C)

Good morning, Mr. Chairman and Members of the Subcommittee. 

My name is Kelly Buckland and I would like to start by thanking you for your commitment to enabling people with disabilities to participate fully in their communities by investing in the Independent Living Program.

Today, I am honored to appear again before your Subcommittee to ask that you consider reaffirming your commitment to more than 54 million Americans with disabilities by increasing funding for Centers for Independent Living (CILs) by $100 million, for a total of $173.3 million in FY 2009. I am not making this request as one who would benefit from such an appropriation. Rather, I am asking as the President of the National Council on Independent Living (NCIL), as the Executive Director of the Idaho State Independent Living Council, and as a person with a disability who remains dedicated to increasing the availability of the invaluable and extremely cost-effective services Centers provide. 

NCIL is the oldest cross-disability, national grassroots organization run by and for people with disabilities. NCIL's membership includes people with disabilities, Centers for Independent Living, Statewide Independent living Councils, and other disability rights organizations. As a membership organization, NCIL advances independent living and the rights of people with disabilities through consumer-driven advocacy. NCIL envisions a world in which people with disabilities are valued equally and participate fully.

Centers for Independent Living are non-residential, community-based, non-profit organizations in all but five Congressional Districts that are designed and operated by individuals with disabilities and provide four core services: advocacy, information and referral, peer support, and independent living skills training. CILs are unique in that they operate according to a strict philosophy of consumer control, in which people with any type of disability, including people with mental, physical, sensory, cognitive, and developmental disabilities, of any age, directly govern and staff the Center. Each of the 336 federally funded Centers are unique because they are run by people with disabilities and reflect the best interest of each community individually.

Centers for Independent Living address discrimination and barriers that exist in society through direct advocacy. These barriers are sometimes architectural, but more often reflect attitudes and prejudices that have been reinforced for generations. They have deterred people with disabilities from working, leaving many in poverty and unjustly detained in institutions. As my own life experience has proven, with increased opportunities, individuals with disabilities can claim their civil rights and participate in their communities in ways their non-disabled counterparts often take for granted.

Because of the Independent Living Movement’s influence on my life, I have been actively involved in disability issues since 1979. Over the past two and a half decades, I have worked closely with the Idaho State Legislature on issues affecting people with disabilities, including passage of the Personal Assistance Services Act and the Fathers and Mothers Independently Living with their Youth (FAMILY) Committee, which changed all of the Child Custody Laws in Idaho to protect the rights of parents with disabilities.  And it is my honor to appear before you today on behalf of the nation’s Centers for Independent Living.

CILs often identify and implement needed services in their communities that remain unfunded. NCIL estimates that to meet the current demand and overcome three years of funding cuts, appropriations for the IL Program will need to increase by $100 million. Increased funding should be reinvested from the billions currently spent to keep people with disabilities in costly Medicaid nursing homes and institutions and out of mainstream of society. $100 million of the $160 million Centers have saved the Federal government over the past three years should be reinvested immediately.  Considering the amount of money that could be saved simply by supporting Centers in their mission to reintegrate people with disabilities unjustly detained in nursing homes and other institutions, this solution is both morally sound and financially expedient. 

According to data collected by the Rehabilitation Services Administration, during Fiscal Years 2004 – 2006, Centers for Independent Living:

• Attracted over $520 million through private, state, local, and other sources annually;
  
  
• Moved 8,381 people out of nursing homes and institutions, saving states and the Federal government well over $160 million, not to mention improving people’s quality of life, and;
  
  
• Provided the core services of advocacy, information and referral, peer support, and independent living skills training to over 3 million individuals with disabilities.1

In that same period, Centers provided other services to over 659,000 individuals with disabilities in their respective communities that included:

• Services to over 56,000 youth with disabilities;
  
  
• Assistance to over 169,000 people in securing accessible, affordable, and  integrated housing;
  
  
• Transportation services to over 106,000 people with disabilities;
  
  
• Personal assistance services to over 163,000 people with disabilities;
  
  
• Vocational and employment services to 105,000 people with disabilities, and;
  
  
• Assistance with Assistive Technology for 114,000 people with disabilities.

Beyond the direct services they provide, CILs seek ways to broadly change traditional service delivery in their communities and throughout the nation, including reform of the long-term care system. For over 30 years, Centers for Independent Living have sought community-based programs to assist people with all types of disabilities, across the lifespan, to remain in or return to their family and friends, in their homes and communities. When such services are delivered in an individual’s home, rather than a costly nursing facility or other institution, the invariable result is tremendous cost savings to Medicaid, Medicare and states, while enabling people with disabilities to become more independent, financially self-sufficient, and less reliant on long term government supports.

Cost-effectiveness of Community-based Services

Indeed, Mr. Chairman, research conducted by your home state found that community-based services are at least 21% less expensive than nursing home placements. According to the Wisconsin Department of Health and Family Services:

The total cost in Medicaid Assistance (MA) “…in Fiscal Year 2007 of serving the individuals under the Community Relocation Initiative during the period they lived in their new community settings was $30.7 million. If instead these individuals had remained in their institutional settings during this time period, their MA cost of services would have been $39.3 million… the Community Relocation Initiative produced total savings of $8.6 million in FY07.”

Moreover, the report found that “the average daily community cost of individuals served under the nursing home diversion program in FY07 was $59.61, of which $50.33 was waiver costs and $9.28 was card costs. The projected daily MA cost of serving these individuals if they had entered a nursing home is $130.87, assuming that their institutional costs would have been similar to those of the individuals served under the Community Relocation Initiative. The estimated cost of the individuals relocated under the nursing home diversion program in SFY07 is $723,400 all funds. The projected cost of serving these individuals in nursing homes, if they had needed to enter a nursing home, during the same time period was more than double this amount, at $1.6 million all funds.”2

The Wisconsin Community Relocation Initiative’s success reflects the systems change activities CILs are struggling to perform on their meager budgets, which have been cut for the past three years despite increased demand for services. Such initiatives if replicated nationwide through increased funding of the Independent Living Program will assist people with all types of disabilities across the lifespan to gain the right to live, work, and participate independently in society. 

In 1999, Independent Living Research Utilization (ILRU) conducted a study to determine what work Centers accomplish. The study found that each Center needs an annual base funding of $250,000 to fully carry out the responsibilities assigned them.3 That figure would be significantly higher today, given increased mandated responsibilities and inflation. Yet, current funding (under Part C of Title VII of the Rehabilitation Act) provides only $73.3 million to support 336 Centers throughout the country. The average grantee receives approximately $218,000, which often includes funding for one or more satellites. After three consecutive years of funding cuts, Independent Living is now funded below the FY 2003 base level.

Clearly, investing in Centers for Independent Living makes sense. In 2000, with the $48 million Centers received in federal funding, they were able to attract an additional $267 million through grants, contracts, state funds, and a variety of other creative funding sources. The percentage of Title VII funds as part of the gross revenue had dropped 2% and fee-for service had increased by 2%, showing CILs have diversified their funding. In other words, we make the taxpayers money work for you and for our consumers.

Transition Services in Rehabilitation Act Reauthorization

Based on growing consumer demand and population trends, NCIL strongly supports the current Senate draft bill to reauthorize the Rehabilitation Act of 1973, as amended. This reauthorization, a decade in the making, creates a fifth core service: transition. This includes youth transition from school to higher education and work, and development and support of moving people out of costly Medicaid nursing home facilities into their communities. We are working with your colleagues on the relevant authorizing committees in both chambers of Congress to enact this additional service. Funding these sorely needed transition services will be critical to promoting effective employment outcomes, successful nursing home transition, and increased community participation for transitioning students.

Current funding levels barely sustain day-to-day operations. Centers struggle to meet the demands of the community and provide leadership and common sense solutions. Without increased funds our vision to achieve full integration of people with disabilities in society will be undercut and taxpayers will continue to pay for costly Medicaid nursing homes and bare the economic impact of negative employment outcomes and continued dependence on programs that disincentivize work and community involvement.

Centers for Independent Living are an excellent service and a bargain for America. They keep people active and engaged in their communities, and they save taxpayer money. Funding Centers for Independent Living makes sense: common sense and dollars and cents.

Thank you again for this opportunity, Mr. Chairman and Subcommittee members. We will follow up with each of you to invite you to visit your local Center for Independent Living so you can see first hand their contributions to your Congressional Districts. We look forward to working with you to ensure that Americans with disabilities have the opportunity become active members of society. Please do not hesitate to contact Deb Cotter of the NCIL Policy staff if we can provide you with additional information. Deb can be reached at (202) 207-0334, ext 1008 or deb@ncil.org.