ADVOCACY AND PUBLIC POLICY
As the state's largest advocacy organization for individuals with intellectual and related developmental disabilities, The Arc of New Jersey plays an integral role in developing statewide policy affecting these individuals and their families. State agencies rely on our expertise to make critical decisions concerning the welfare of people with intellectual and developmental disabilities, and The Arc of New Jersey works collaboratively with the Legislature and the Administration to ensure that the well-being of these individuals is a priority both legislatively and in each fiscal budget. Our goal is essentially two-fold: to create public awareness in New Jersey's communities while keeping the concerns of our population in the legislative forefront.
THE STATE BUDGET: FY2010 and FY2011
We recognize that the state is facing enormous fiscal challenges and that difficult choices will have to be made in order to preserve the greater good.
However, New Jersey's programs and services for people with intellectual and other developmental disabilities have been dangerously underfunded for several years, and it is The Arc of New Jersey's position that the developmental disabilities system is already in crisis and is too fragile to sustain any budget cuts in the FY2010 or FY2011 state budgets.
This is our highest priority: we absolutely must sustain the funding of New Jersey's current DD system.
The Arc of New Jersey stands ready to assist statewide policymakers in trying to identify efficiencies in the delivery of services to individuals with developmental disabilities throughout the state. To that end, we urge the Administration to conduct a comprehensive assessment of the Medicaid Community Care Waiver to ensure that all federal revenues are being claimed. All funding that comes into the state under the Community Care Waiver should be used to provide services and supports for individuals with developmental disabilities.
Additionally, all individuals who have been identified as living in group homes and other residential programs who are not on the Community Care Waiver should be immediately added to the Waiver so that federal reimbursement can be claimed for them, and redeterminations for individuals on the Community Care Waiver must be made in a timely fashion so the state does not lose necessary federal revenues. We must also ensure that there is enough staff available to work on drawing down all available federal funds, even if that means reassigning staff from other projects.
ABUSE REGISTRY
Individuals with intellectual and other developmental disabilities have the right to live without the fear of being physically or sexually abused, neglected, harassed or exploited. Because they may be nonverbal, have limited cognitive functions or have mobility impairments, many individuals with intellectual and other developmental disabilities are in a uniquely vulnerable position when it comes to abuse and neglect. And unfortunately, a great deal of the suspected abuse and neglect of these individuals is hard to prosecute.
Victims, even when they do report incidents, typically do so days or weeks afterward, making it very difficult to conduct an appropriate investigation and collect evidence. Thus, although provider agencies can terminate a staff member's employment if their own investigation finds the abuse was substantiated, it is often difficult to provide police with the needed evidence for a criminal conviction. This makes it difficult for the State and provider agencies to regulate the future hiring of individuals who have a substantiated allegation of abuse and neglect on their record.
The Arc of New Jersey has been a lead agency for several years in advocating for the establishment of a statewide registry for caregivers who have abused or neglected individuals with intellectual or other developmental disabilities. In February, 2010, the bill passed both the House and the Senate, and is now awaiting final approval from Governor Chris Christie.
THE WAITING LIST
Despite state legislation in 1997 calling for the elimination of the waiting list for services, 8,500 people are currently sitting on that same waiting list with little to no hope of reaching the top within their lifetime. The Arc of New Jersey is calling upon the state to work toward the immediate and systemic reduction of the Waiting List. In addition to the fact that families in the urgent category of the waiting list are desperate for help, this is also a smart financial investment.
When families reach the breaking point, the state winds up having to provide emergency services for their loved ones. More often than not, this results in an expensive residential program. If the funding were there to intervene up front, that family may have been able to get by with a less-expensive alternative, such as in-home supports.
The Arc of New Jersey's White Paper, The 10% Solution: Ending the Wait for Individuals with Developmental Disabilities Living at Home with Aging Caregivers, outlines this issue and our recommendations in greater detail.
DEINSTITUTIONALIZATION
Despite a 1999 United States Supreme Court decision calling for community integration, 2,300 individuals with developmental disabilities who have expressed a desire to live in the community remain warehoused in large state-operated institutions.
The Arc of New Jersey is calling upon the state to immediately and systematically begin the closure of two of the state's seven developmental centers within the next four years. This is the first step in a longer process needed to close five of the state's seven institutions over the next 12-15 years.
This is both a human rights and an economic issue. People with developmental disabilities have the right to be fully included in their communities, and not to be segregated or treated as second-class citizens. Additionally, in the long-term, the state will realize a significant savings through the closure of large state-run institutions. That same funding can be used to provide better services to more people in the community.
The Arc of New Jersey's White Paper, The Future of Individuals with Developmental Disabilities and New Jersey's Developmental Centers, outlines this issue and our recommendations in greater detail.
CASE MANAGEMENT
Despite recent progress in this area, case management in the Division of Developmental Disabilities continues to be a significant problem, with some caseloads as high as 300-400 for one case manager.
Individuals with developmental disabilities and their families are typically unable to get even a return phone call from their case manager, sometimes waiting for months or even years. While the Department of Human Services' current initiative to transfer cases that require only information or referral services to the Division of Disability Services appears to be a sensible direction, more work must be done to remedy this problem.
The Arc of New Jersey's Fact Sheet, Reform the Division of Developmental Disabilities' System of Case Management, will be available soon and outlines this issue and our recommendations in greater detail.
COMMUNITY INFRASTRUCTURE
One of the reasons New Jersey continues to rely so heavily on institutional-based care and remains unable to solve the waiting list problem is the lack of community infrastructure to support people with developmental disabilities in the community. In addition to the tremendous need for behavioral and medical supports for people with developmental disabilities, there is a great need for housing, transportation, and employment services.
Additionally, despite their annual plea for appropriate increases, community agencies that provide services to people with developmental disabilities and their families have not received a contract increase commensurate with inflation for the last 15 years.
Community provider agencies who provide twenty-four hour care to people with developmental disabilities must receive adequate contract increases to keep up with the cost of inflation. In addition to rising health care and transportation costs, salaries for state workers who provide care in institutions and those who provide the same care in agencies under contract with the state must be equalized. Agencies need to be able to rely on predictable growth in their contracts.
INFORMATION TECHNOLOGY AND DATA
Despite years of discussion about the problem, the Division of Developmental Disabilities does not have the needed information technology to collect and manage data, improve billing efficiencies, avoid burdensome budget modification processes, and improve overall contract administration.
Additionally, despite many internal and external attempts to remedy this situation, the Division of Developmental Disabilities does not collect and/or disseminate critically-needed planning data regarding the population they serve.
The state should immediately invest in desperately-needed information technology services within the Division of Developmental Disabilities in order to create efficiencies and avoid burdensome and duplicative processes for both the provider community and Division staff. This technology will also ensure that the Division can begin to properly collect and manage much-needed planning data.
The Arc of New Jersey's Fact Sheet, Legislation Requiring the New Jersey Division of Developmental Disabilities to Collect and Disseminate Needed Data on Individuals with Developmental Disabilities outlines this issue in greater detail.