The quality of life for New Jerseyans with developmental disabilities is not improving, and in fact is diminishing due to the economic crisis. However, a ray of hope exists with a recent attempt by members of the State Legislature to begin with a compilation of data about these individuals.
New Jersey State Assembly members Valerie Vainieri Huttle, Upendra Chivukula and Ruben J. Ramos Jr. have introduced a bill in the lower house that is designed to arouse public awareness of New Jerseyans with Developmental Disabilities, and to increase enrollment of these individuals with special needs in public programs that were created to serve them.
Assembly bill A-2878, if passed, would create a state database of people with developmental disabilities in order to identify those who are eligible for such programs.
Under A-2878, the New Jersey Division on Developmental Disabilities would be responsible for implementing the plan.
According to Assemblywoman Huttle (D-Bergen): "New Jersey provides some absolutely wonderful support and quality of life improvement services for individuals with developmental disabilities […] Unfortunately, we're not that wonderful at informing residents about these programs. This bill would change that."
As new individuals become eligible for services, their name would be entered onto the date base on a rotating basis. Annually, those who are listed would be notified of:
- “The services currently being received from the division;
- The individual's status on any waiting lists;
- The best way for an individual to update their vital statistics; and
- Information about where to find services.”
Chivukula (D-Somerset/Middlesex) points out that, "As a society, we should be judged on how we treat our most vulnerable residents, including those with developmental disabilities [...] If we want to be judged well, and make improvements where we aren't succeeding, we need to know exactly where we stand in caring for people with disabilities."
The Division on Developmental Disabilities would also be required to create an annual public report on the status of New Jerseyans with developmental disabilities. Ramos (D-Hudson) has suggested that:
"Reliable and current data about the service needs of persons with developmental disabilities who are eligible for services is fundamental to the division's ability to plan effectively to meet those needs [...] Similarly, in order to make appropriate decisions about state funding for these services, it is important to understand the needs of persons with developmental disabilities served by the division."
A-2878 also stimulates that the following information be collected:
- the person's name and contact information, guardian, if applicable, and any primary caregivers;
- the person's age, gender, race or ethnicity, and disability or diagnosis, as applicable;
- a needs assessment categorized, at a minimum, by the person's need for residential services, employment or day support services, family support services, medical support services, and behavioral support services;
- a description of the services the person is currently receiving, including: in the case of residential services, whether those services are provided in a developmental center, group home, supervised apartment, community care residence, nursing home, or out-of-State placement; in the case of day support services, the type of day support service; and in the case of an individual budget to purchase services, the amount of that budget and the services that are being purchased with the funds from that budget;
- a list of all services from the division for which the person is currently eligible;
- a list of services that the person or his parent or guardian has indicated the person would like to receive but cannot access, including residential and day support services, and an explanation of the reason the person cannot access the service;
- an anticipated change in the level of need of the person over the next 10 years and an anticipated date when those changes can be expected to occur;
- the age and overall health status of any primary caregivers of the person; and
- the length of time a caregiver anticipates being able to continue to provide services to the person.”
It will be interesting if the Governor supports such a measure. Currently, many people with developmental disabilities remain isolated without services, and with a limited access to community activities, poor or non-existent health care, and little or no socialization. Many young people with developmental disabilities are on the verge of being homeless as their parents are deceased or are too old and fragile to care for them. Yet New Jersey’s waiting list for housing for these individuals requires them to wait at least eight years, by which time many family members have passed on and homelessness becomes a reality.
Although attempts have been made by FEMA and other groups to identify these people for evacuation purposes during an environmental catastrophe or a terrorist attack, many have not been identified because the method for compiling the list requires these individuals to voluntarily identify themselves. Yet, many do not have the skills or ability for self-identification, do not own a computer, or have the independence to operate a telephone. During Hurricane Katrina, thousands of people with developmental disabilities perished because they could not evacuate themselves and were simply forgotten.
Nevertheless, it is good to know that members of the state legislature have recognized the problem and have publicly acknowledged it.
Dr. Salvatore Pizzuro is a disability policy specialist and civil rights advocate in New Jersey.