January 10, 2019
NJ Lags Nation for Disabled Residents in Community Settings
State officials reply to findings of new report saying positive change is already in progress
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.)
Year-2014
According to an Evidence-Based Policy Brief conducted by the University of Minnesota’s Research and Training Center on Community Living, “there is a high preponderance of evidence that individuals moving from institutional to community settings consistently develop their daily living skills (adaptive behavior) to a higher level than their matched peers who remain institutionalized and/or that they themselves had developed prior to leaving the institutional settings”.
As cited in the United Cerebral Palsy’s “The Case for Inclusion 2014” report, according to the University of Minnesota’s Research and Training Center on Community living, “As of 2012, 14 states have no state institutions to seclude those with ID/DD, including Alabama, Alaska, Hawaii, Indiana, Maine, Michigan,Minnesota, New Hampshire, New Mexico, Oregon, Rhode Island, Vermont, West Virginia and Washington, D.C. Another 11 states have only one institution each. Since 1960, 219 of 354 state institutions have been closed (10 more in the past year alone), according to the University of Minnesota’s Research and Training Center on Community Living. Another 16 more are projected to close by 2016.
As of 2014, 38 states now meet the 80/80 Community Standard, which means that at least 80 percent of all individuals with ID/DD are served in the community and 80 percent of all resources spent on those with ID/DD are for community support. Those that do not meet the 80/80 standard are Arkansas, Illinois, Iowa, Kentucky, Louisiana, Mississippi, Nebraska, New Jersey, North Carolina, Oklahoma, Texas, Utah and Virginia, although Nebraska, North Carolina, Oklahoma, Utah and Virginia are very close.
Shutdown of Institutions-2014
The Task Force on the Closure of Developmental Centers issued binding recommendations on August 1, 2012 to close North Jersey Developmental Center (NJDC), followed by Woodbridge Developmental Center (WDBR). The Governor’s proposed FY15 budget advances the Department’s responsibilities to implement and effectuate both closures.
In accordance with the United States’ Supreme Court Olmstead decision, states must provide community living options and other supports to individuals with disabilities who do not require institutionalized care. The closure of NJDC advances New Jersey’s efforts in this regard.
The census among the state’s seven (7) developmental centers (DCs) has decreased by nearly 50% since 1998 when the state closed North Princeton Developmental Center. The census in 1998 was 3,672; as of February 1, 2014 it is 2,019.
- As of February 21, 2014, the North Jersey Developmental Center (NJDC) census was 174 men and women.
- As of February 19, 2014, the Woodbridge Developmental Center (WDBR) census was 228 men and women.
The New American Movement for People with Disabilities celebrates the closing of Totowa Developmental Center on July 1st 2014 and Woodbridge Developmental Center on January 1st 2015.
2009
In 2009, a settlement agreement was reached between Disability Rights New Jersey, Inc. and the New Jersey Department of Human Services in the matter of Disability Rights New Jersey, Inc. Et al, Plaintiffs, v. Jennifer Velez et al., Defendants, Docket No. 3-05-CV-04723 (AET). A schedule of placements can be found on page 3 of the settlement agreement:
- Between July 1, 2012 and June 30, 2013 – 90
- By June 30, 2014 – An additional 115 – cumulative total of 205
- By June 30, 2015 – An additional 115 – cumulative total of 320
- By June 30, 2016 – An additional 115 – cumulative total of 435
- By June 30, 2017 – An additional 165 – cumulative total of 600
While there seems to be incremental progress regarding the closure of state institutions for people with intellectual and developmental disabilities, the New American Movement advocates for the eventual closure of all types of congregate care. This can only be achieved as more centers close, which will in turn, lay the groundwork of diverting resources to community-based services. Additionally, there is much evidence to support our claim that congregate care is an outdated and expensive model for providing supports and services to the disability community. In particular, the New American Movement focuses its deinstitutionalization campaign on the seven remaining developmental centers in New Jersey. Despite the fact that it is our home state, we strongly push for their closure being that New Jersey is only second to Texas in its rate of institutionalization.
Aside from the positive results of living within the community, community-based services can be designed for any individual with a disability. The New American Movement has witnessed its success firsthand being that many members on our team have either lived in an institution or are close with people who have undergone the experience.
In New Jersey, many families believe that the care provided in developmental centers is of the highest quality and cannot be replicated. If this is the case, then why isn’t everyone going to developmental centers to receive “superb” healthcare and take advantage of the proximity to doctors, support staff and unlimited social and occupational therapies that are offered? We could also achieve desegregation by utilizing the beds and rooms of closing developmental centers in New Jersey and elsewhere to serve as housing for all members of the community. The New American Movement is confident in the assertion that no one is jumping up and down and waving their hands to relocate to an institution; therefore, why do some believe that people with intellectual and disabilities want and should be there? We must learn to put ourselves in their shoes when determining how we can help this community achieve the best lives possible; otherwise the overall mission of the field is unattainable and lacks credibility.
Sources:
“Information of the Closure of Developmental Centers.” Division of Developmental Disabilities (DDD), n.d. Web. <http://www.state.nj.us/humanservices/ddd/home/centers/dcclosure.html>.
“The Case for Inclusion 2014.” . United Cerebal Palsy, n.d. Web. <http://cfi2014.ucp.org/wp-content/uploads/2014/03/Case-for-Inclusion-2014.pdf>.
Bragdon, T. (2013). The case for inclusion. Retrieved from http://www.ucp.org/the-case-for-inclusion/2013/images/Case_For_Inclusion_Report_2013.pdf
“Introducing the Administration for Community Living.” Administration for Community Living. Department of Health and Human Services, n.d. Web. <http://www.hhs.gov/acl/>.