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New Jersey Ranks 38th Among All States in Efforts to Serve Individuals with Intellectual and Developmental Disabilities

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file photo by Boyd Loving

the staff of the Ridgewood blog

Trenton NJ, in April Gov. Phil Murphy announced the appointment of former Ridgewood Mayor Paul Aronsohn to head up the newly created Office of the Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families, serving as the administration’s lead advocate and ally for New Jersey residents in need of critical services ranging from early childhood through adulthood.

But according to the ANCOR Foundation,stagnant or declining investments in state programs that help individuals with intellectual and developmental disabilities lead more independent and productive lives have resulted in New Jersey dropping from 34th place in 2016 to 38th place this year in state rankings, according to the Case for Inclusion 2019, compiled by the ANCOR Foundation and United Cerebral Palsy (UCP).

The Case for Inclusion 2019 ranks all 50 states and the District of Columbia on how well state programs, primarily Medicaid, serve those with intellectual and developmental disabilities (I/DD). The states are ranked in five key areas critical to the inclusion, support and empowerment of individuals with I/DD and their families: Promoting Independence, Promoting Productivity, Keeping Families Together, Serving Those in Need, and Tracking Health, Safety & Quality of Life.

The biggest factors affecting New Jersey’s poor performance are low marks in the areas of Promoting Independence and Promoting Productivity. New Jersey ranks in the bottom 10 of all states in these areas, at 42nd and 43rd, respectively. Particularly problematic for the Garden State in the area of Promoting Independence is that it fails to meet the coveted “80/80 standard”; although at least 80 percent of the state’s residents with I/DD received Home and Community-Based Services (HCBS), the state failed to spend at least 80 percent of its Medicaid dollars on helping people with I/DD live in the community.

The Case for Inclusion, which has been published regularly since 2006 by UCP, compiles the most recent data available (generally from 2016 for this report) and analyzes 30 outcome measures in the five major categories. The ANCOR Foundation joins UCP this year in publishing the report. Among the other key findings on New Jersey’s performance:

• 5.8 percent of the state’s residents with I/DD—the fifth-highest percentage in the nation—live in one of New Jersey’s five state-run institutions.

• More than 3,100 New Jerseyans with I/DD live in large-scale congregate care settings, defined as group homes or Intermediate Care Facilities with at least seven residents.

• Only 11 percent of working-age individuals with I/DD in New Jersey were working in competitive employment—meaning they work alongside those without disabilities and earn market-driven wages—compared to the national average of 19 percent.

• One relative bright spot was in the area of Serving Those in Need, where New Jersey ranked 22nd, in part because of its relatively low number of individuals on the state’s waiting list for residential services (3,201).

Nationally, the report found that notable advances in the support of individuals with I/DD have stalled. For instance, just 29 states—two more than in the 2016 Case for Inclusion—report that at least 80 percent of these Americans are served in home-like settings, such as a family home, their own home or a small group setting—a number that hasn’t budged from the 2016 Case for Inclusion findings. And decades after states embarked on efforts to close large institutions that warehouse the intellectually and developmentally disabled, just 15 states have eliminated all such facilities, a number that is also unchanged from 2016.

The report documented downward trends in two critical areas: (1) the number of people on waitlists for residential and community services, and (2) the number of individuals with I/DD working in competitive employment. The Case for Inclusion 2019 found the number of people on waiting lists for Home and Community-Based Services was up 75,000 from the 2016 report to almost 424,000. Just seven states, down from 10 in 2016, reported at least 33 percent of working-age individuals with I/DD working in competitive employment.

“Individuals with I/DD, including the young and the aging, want and deserve the same opportunities and quality of life as all Americans. Yet some states do much better than others in demonstrating the needed political will and implementing the sound policies and focused funding necessary to achieve this ideal,” the report states.

“The pervasive theme across states and, specifically in New Jersey, is that the Direct Support Professional (DSP) crisis created by an inability to recruit and retain DSPs contributes to these challenges. I just learned yesterday that an agency has a house ready and waiting to receive three individuals that want to live within the community, however, the agency is struggling to find staff.

With New Jersey failing to meet the 80/80 standard meaning the state failed to spend at least 80 percent of its Medicaid dollars on helping people with IDD live in the community and in the bottom five for the number of institutions remaining, we can and must do more.,” commented NJACP CEO Valerie Sellers.

It is notable that during a period of polarization on many issues, policies that support individuals with I/DD have support from stakeholders across the political spectrum. For example, the 10 highest-ranked states are a political mix, including deep-blue Oregon and California and deep-red Kentucky and South Dakota. Armando Contreras, President & CEO of UCP, notes that “across the country, we see efforts by state policymakers to enhance their approach to Medicaid services and supports and related programs for the I/DD population by making the best use of existing and scarce resources. Of course, additional funding to keep pace with the diverse needs of this population would help, but new ideas and shared best practices from successful states have the potential to drive improvements even absent additional funding.”

The full Case for Inclusion 2019 report, along with scorecards for each state and additional resources, can be downloaded at caseforinclusion.org.