President's Forum | Closing the Gap, by Zena Naiditch

Closing the Gap

by Zena Naiditch

As the independent, not-for-profit organization designated by the Governor in 1985 to administer the federally mandated Protection and Advocacy System for the state of Illinois, Equip for Equality has recently undergone tremendous change and growth in our efforts to advance the human and civil rights of people of all ages in our state who have a disability. But despite our expansion and successes - or perhaps because of them - EFE faces growing demands and expectations from the disability community and many new challenges.

As the state's primary provider of legal services and self-advocacy assistance to people with disabilities, EFE devotes the majority of its resources to support its direct advocacy services, which range from brief advice and referrals to representation in court. The demand is high. The vast majority of people with disabilities are poor, meaning they are dependent upon free or low-cost legal advocacy programs. Unfortunately, their legal advocacy needs far surpass our ability, and that of other advocacy groups and legal service providers, to meet them.

Typically, EFE provides from 30 minutes to two hours of advocacy advice, information and referrals to individuals who contact us. Often, they really require ongoing self-advocacy assistance or direct representation in negotiations, in administrative proceedings or in court. And as our intake numbers increase each year - and they are likely to rise even more as the state continues to make deeper and deeper cuts in basic services and supports - we are forced to reduce the areas in which we can provide even this basic level of advocacy assistance.

This month, I spent time with our advocates and attorneys, who do intake and provide short-term assistance, and we brainstormed about options to address the growing demand for legal advocacy services. They are frustrated that we cannot accept for legal representation many of the cases that fall within our focus areas because we simply do not have sufficient resources. And our efforts to focus on systemic cases that benefit the broader disability community are challenging because so much of our energy goes to providing brief services on routine problems encountered by individuals with disabilities.

So the critical question becomes where do we focus our legal advocacy efforts? What is the best balance in resource allocation between brief advocacy advice and referral, ongoing self-advocacy assistance, legal services that have a profound impact on one individual's life, and systemic cases that positively impact larger numbers of people?

As we endeavor to impact the broader disability community, we must consider how to reach more individuals who require disability rights information and advocacy assistance. Our Training Institute on Disability Rights has enabled us to increase by two-thirds the numbers we serve annually at a modest cost.

As important, the Institute enables us to focus on prevention through education by teaching people with disabilities and their families about their rights and responsibilities under the Americans with Disabilities Act (ADA), special education and other laws intended to level the playing field. At the least, many problems are resolved early enough to prevent serious consequences. Our recent introduction of on-site seminars at our Chicago office provides the opportunity for many more individuals to participate in trainings, and we plan to explore other strategies to expand the scope of the Training Institute.

Our Public Policy Program is also feeling stress as it tries to influence what happens in Springfield with the same size staff it has had for many years. The introduction of disability-related bills each session is voluminous, and the program tries to identify a handful that will have the greatest impact, positively or negatively, on the rights, independence and quality of life of people with disabilities. At the same time, we are attempting to draft EFE's own legislative reform packages to benefit the broader disability community.

Our new Abuse Investigation Unit is also challenged to direct its limited resources where it can have the greatest impact. Based on site visits to many Community Integrated Living Arrangements (CILAs) and nursing homes, and all state-operated mental health and developmental disability facilities, it is clear there are significant issues that must be addressed to enhance the safety of individuals receiving services and to ensure that programming meets minimum standards and that the physical environment is adequate.

To address our growth and poise EFE for future expansion at this juncture in our development, there are key challenges and internal management projects:

Assess agency-wide needs. Ensure that our primary programs and initiatives have the resources and support systems to maintain their high quality while responding to increasing demands and expectations.
Take programs to scale. Take our initiatives to the next level by expanding their reach to benefit more people.
Expand and diversify resources. Further diversify and expand our funding base and find ways to generate unrestricted earned income.
Focus on strategic planning. Engage the Board and staff in strategic planning to provide a blueprint for EFE over the next three years.

As the state's P&A System, EFE has an obligation to reach out to all people with disabilities, especially underserved populations, and to ensure that our plans and priorities target our limited resources on strategies to break down major barriers to their inclusion in all aspects of their communities - school, work, recreation and housing.

When Congress mandated the creation of independent P&A systems in each state in the mid-1970s, the expectation was that these organizations would be a place where individuals could turn when their rights were violated or they were subjected to abuse and neglect, particularly in facilities funded by the public. The P&A system was a "safety net." Over time, as inadequacies were documented in existing federal and state systems responsible for ensuring quality care and the safety of individuals receiving services, Congress expanded its expectations of the P&A system to include a watchdog or oversight role over public and private facilities and government systems.

At the same time that Congress has expanded the role of the P&A system, including its statutory authority and powers, it has also created a growing number of very small P&A projects. Today, EFE has seven separate federally funded P&A programs and projects administered by federal departments. Our primary P&A funding, however, continues to be for people with developmental disabilities and mental illnesses, followed by significantly lower funding to cover the largest subgroup, people with all other disabilities (as defined by the ADA). This situation is a challenge because it creates inequity on how we deliver legal advocacy services for people with disabilities.

This year alone, two new P&A projects were established by Congress: a P&A Voting Project under the Help America Vote Act and the P&A Project for People with Traumatic Brain Injury. These smaller new P&A projects join the existing P&A for Beneficiaries of Social Security (PABSS) Project and the P&A project to support people with disabilities in securing assistive technology (AT) devices and services. For several years, the federal grant award for the Illinois AT P&A Project has been $50,000.

This growth pattern at the national level - the proliferation of small P&A projects with different administering federal agencies and separate reporting requirements - has created significant management challenges for our organization and made streamlining of our systems impossible in many instances.

Today, the disability community and Congress expect the state P&A system to:

Provide legal advocacy services to individuals seeking to resolve common rights violations.
Achieve reform of major governmental systems and public and private facilities through high-impact litigation, public policy advocacy or the release of public reports.
Investigate abuse and neglect.
Serve as a watchdog over state government and public and private providers of services to people with disabilities.

P&A systems are supposed to be both reactive and proactive, addressing common rights violations faced by individuals and simultaneously achieving systemwide reforms, promoting self-advocacy and empowerment while also pursuing systemic litigation.

Through our upcoming strategic planning process, the Board of Directors and EFE staff will need to consider how we can best address the advocacy needs of the disability community with its diverse expectations and goals, in addition to the oversight and investigatory responsibilities given to us by Congress. Once again, we will try to find the best mix of advocacy strategies and the best allocation of our limited resources in each of these areas.

As always, we encourage advocacy organizations, service providers and professional associations, and individuals to participate in this process. I look forward to hearing from you. If you would like to assist us in any way, please share your thoughts by writing to me at our Chicago office or sending an e-mail to contactus@equipforequality.org. =

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