Improving and Expanding Independent Living Services for Persons with Disabilities

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Improving and Expanding Independent Living Services for Persons with Disabilities Don Pryor, PhD; Bethany Welch, PhD; Maria Ayoob, MPH Center for Governmental Research, One South Washington Street, Rochester, New York Background Methods Challenges for ILCs • Geographic Service Gaps • 17 counties have neither an ILC nor a • satellite operating within County borders. • Underserved areas are concentrated in • the NYC and Long Island Counties, and • counties in the Southern Tier and Finger • Lakes regions. • Services Needed and Received • Create an overarching agenda that represents the needs of ILCs across the state • Educate and collaborate with entities such as County governments, United Way, foundations, business community • Consolidate transportation resources • Share resources with other agencies, e.g. bilingual staff • Promote communication and peer-to-peer learning among ILCs • Develop a shared vision, professional development opportunities, employee recognition and other ways of strengthening staff engagement and abilities • Maximize the role of Board members • Use NYAIL resources to assist with staff and board development • Continue to demonstrate cost-savings and benefits for people with disabilities of enabling employment, preventing institutionalization, and the shared vision of ILCs and other movements that serve underserved populations. • Independent Living Centers • Independent Living Centers (ILCs) operate in 45 of New York State’s 62 • counties, advocating on behalf of people living with disabilities, • promoting the independent living philosophy and providing information • and resources to their members. 36 State funded ILCs served more than • 17,000 people in 2006-2007; more were served by an additional 14 • centers that do not receive State funding. • The Independent Living Philosophy • The independent living (IL) movement emphasizes the rights and ability of people with disabilities to live independently. The IL philosophy holds that “individuals with disabilities have the right to live with dignity and with appropriate support in their own homes, fully participate in their communities, and to control and make decisions about their lives.”* • The State-wide Picture • 35 ILCs and 18 satellites are • located in 45 counties in NYS. • The average ILC : • Serves 2,000 consumers per year • Has 35 full and part-time staff • Has a budget of ~$2.4 million • * Other Funding is funding for sources other than NYS and Federal, such as local municipality or • Medicaid. Source: VESID, 2008. • Persons Served, 1999-2006 • Service volume increased by nearly 20% from 1999-2000 to 2006-2007. • *Independence First. http://www.independencefirst.org/about/ind_living/ • In 2008, The Center for Governmental Research (CGR) conducted a needs assessment on behalf of • the New York Association on Independent Living (NYAIL). • Purpose of Study • The needs assessment sought to answer the following questions: • How well is the system of ILCs currently serving people with disabilities in New York State? • How can ILCs more effectively meet the needs of people with disabilities in New York State? • What service gaps and barriers interfere with the provision of services? • What resources will ILCs need in the future, and how should those resources be allocated? • Data Collection • Survey of ILC administrators (n=38) • Survey of ILC consumers (n= 1,306) • Survey of community stakeholders (n= 78) • Review of financial and other data from ILCs and State agencies • ILCs Serve People with Disabilities in New York State by: • Mentoring thousands of New Yorkers through a peer model • Promoting independence and living in the most integrated setting possible • Shaping and developing policy • Working to avoid institutionalization • * Not all voluntary reporting ILCs contributed data for each reporting period. • ^ Project started SFY 2002-03 and included cumulative data for SFY 2001-02. • †Net savings as a portion of budgeted NYS funding, after subtracting NYS funds from total dollars saved. • Consumer Satisfaction • 97% of consumers agreed or strongly agreed • with the statement “I am satisfied with the • services of the Independent Living Center.” • ILCs are: • Consumer-focused • Community-based • Non-residential • Non-profit • Cross-disability focused Difficult to Reach Populations • Services provided include: • Housing • Employment • Advocacy • Benefits assistance • Transportation • Medical/health related • Socialization/recreation • Education Barriers to Service Provision Strengths of NYS ILCs Recommendations • Consumer and Stakeholder • Perceptions of Strengths: • Advocacy Efforts • Relationships and networks in the community • Quality of services • Flexible, competent and compassionate staff • Commitment to independent living philosophy • Needs Currently Being Met: • Access to information and resources • Systems advocacy • Special education • Emergency services • Service coordination This study was funded by the New York Association on Independent Living To read the full report please go to www.cgr.org