New Jersey has more residents with disabilities living in large public institutions than all but a handful of states, and far fewer of them are engaged in meaningful daily jobs than the national average, according to an annual report from advocates.
The Case for Inclusion Report for 2019, compiled by United Cerebral Palsy and the ANCOR Foundation, which represents caregivers, ranked New Jersey as 38th nationwide (among all 50 states and the District of Columbia) for how its Medicaid system serves individuals with disabilities and their families. That is down from 34th in the last report, issued in 2016.
The report, based largely on 2016 data, showed that the Garden State ranks in the bottom 20 percent of states when it comes to promoting independence and productivity for disabled individuals. One of the contributing factors to the ranking is that nearly 6 percent of New Jerseyans with disabilities live in one of the five state-run residences, it notes. And close to 8 percent are situated in larger group homes, with more than seven housemates.
The research, published regularly since 2006, shows there has been a significant shift in investment over the past decade from institutional-based services to those designed to help individuals with intellectual or developmental disabilities remain at home or in community programs. In fact, half as many people live in large, less-personal settings now as did a decade ago, and spending on home and community-based services has more than doubled, the groups found.
More needed to ensure meaningful lives
But the authors said more work is needed to ensure these citizens lead lives that are as independent and fulfilling as possible. The report, which rates states in five categories — promoting independence; tracking health, safety and life quality; keeping families together; promoting productivity; and reaching those in need — is designed to help advocates and policymakers identify best practices and improve outcomes.
“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 2019 report, which reflects ANCOR’s involvement for the first time, also underscores the critical role played by direct-support professionals, or DSPs, who care for individuals with disabilities. The field is plagued by high turnover, with only 40 percent of employees nationwide lasting longer than a year. DSP’s low wages barely rival the pay at fast-food restaurants — a situation that has caused growing concern in New Jersey.
State claims services improving
Leaders at the New Jersey Department of Human Services, which oversees programs that serve nearly 22,000 individuals with disabilities and their families, said the state has made progress since 2016 to improve these services. And in October, state officials committed an extra $32 million to salaries for DSPs, resulting in an average wage hike of about 4.5 percent, the DHS said.
“The Department strives daily to help individuals with disabilities live as independently as possible and constantly takes step to improve its program and services,” said DHS communications director Tom Hester.
Among other things, the department has stepped up oversight as a result of a new law designed to better protect residents of group homes and has created a council to help individuals with disabilities more effectively advocate for services, Hester said. In addition, the state launched NJ ABLE this past spring, a tax-free savings program to help qualified individuals with disabilities collect funds to cover costs related to their condition, without making them ineligible for Medicaid or other government assistance.
“These new steps further help individuals with disabilities in New Jersey live independently with the highest quality of life possible, which is and always will be a top department priority,” Hester added.
The landscape for New Jerseyans with disabilities has changed significantly over the past decade, as state officials petitioned federal officials for increased flexibility in the Medicaid system to make it easier for individuals and families to pay for home and community-based services. And under former Gov. Chris Christie the state closed two institutional residencies, in 2014 and 2015.
Not getting out into the community
But with five existing state-run residential centers for individuals with disabilities, which house more than 1,400 in all, New Jersey remains near the bottom of the pack for the low percentage of these citizens living in community settings, according to the report. (The population is now below 1,300, according to DHS.) Fifteen states have no residential institutions at all for this population and 10 states, including Delaware, have only one.
New Jersey is also among the 18 states — also including Delaware and Virginia — that do not meet what advocates call the 80/80 home and community standard, in which 80 percent of residents with disabilities receive community-based services and 80 percent of the funding is directed to these programs. And 11 percent of this population is engaged in meaningful daily work, in jobs with nondisabled colleagues, compared with 19 percent nationwide, the report found.
On the bright side, the Garden State has a relatively short waiting list for residential options (around 3,200 people in 2016), the research shows, and ranks near the top nationwide for the percentage of disabled residents — at least one in five — who are able to coordinate their own support services.
While New Jersey ranked 38th overall, its mid-Atlantic neighbors fared better: New York was 18th, Pennsylvania 19th and Delaware 20th. Maryland ranked 11th, up from 33rd last year, marking the most significant single-year gain nationwide. (Arizona, Oregon, and Vermont were ranked 1st, 2nd, and 3rd this year, and Texas, Arkansas, and Mississippi came in 49th, 50th, and 51st, respectively.)