Part VI. Matheny’s community is not the geographical area we serve. Rather, our community is based upon the population that we serve of people with disabilities and their families throughout the state of New Jersey and sometimes reaching out into other states. It is our responsibility, collaborating with other agencies, to assess the needs of these constituents and to help meet the needs of as much of this population as possible. We understand that we cannot treat everyone, but we can provide information, resources, referrals and training in an effort to help those who have nowhere else to turn.
In an effort to determine the health needs of this community, we designed and distributed a survey to 26 agencies, government officials and legislators, requesting their feedback. Responses were received from 42% (11) of the recipients (see attached list). When asked, “Do you feel that there are pressing health concerns or service needs for persons with developmental disabilities that are not adequately met by existing community resources?”, 100% of the respondents said “yes”. Following are some of those unmet needs
- Medical and dental services, including gynecologic services, face-to-face care management services and specialized training for nurse practitioners who could provide much-needed primary care health services.
- Living quarters for adults, who “should have the opportunity to choose where they want to live, either in a developmental center or a community.”
- Availability of adaptive equipment and medical devices. This is seen as particularly critical for children, who may outgrow some devices that parents can’t afford to replace.
- Access to facilities.
- Day programming.
- Service coordination and follow-up post acute care.
Which unmet needs should Matheny attempt to address?
- Expansion of group homes if sufficient funding can be obtained.
- Initiation or expansion of training of nurse practitioners.
- Expansion of dental services and mental health services.
- Satellite outpatient clinic for people who find it difficult to travel to the main location.
- Expanded day programming and recreation options.
- Service coordination.
Needed services in order of severity of unmet need
- Primary health care for persons with developmental disabilities.
- Services targeting low-income and minority individuals.
- Employment or occupational training for adults with developmental disabilities.
- Residential services for adults with developmental disabilities.
- Residential services for children with developmental disabilities.
- Physical, occupational or other therapies for persons with developmental disabilities.
- Assistive technology services.
- Recreational opportunity for persons with developmental disabilities.
- Early intervention or other in-home therapeutic services for children with developmental disabilities.
Other facilities or organizations that provide services similar to one or more of those offered by Matheny.
- Arc of New Jersey
- Spectrum for Living
- Passaic County Elks Cerebral Palsy Center
- LADACIN Network
- Morristown Medical Center Developmental Disabilities Center
- Childrens Specialized Services
- Arc of Monmouth County Ambulatory Care Center
- Arc of Mercer Healthcare Center
- Advancing Opportunities
- Eastern Christian Children’s Retreat
- Cerebral Palsy of New Jersey
- New Jersey Institute for Disabilities
- PG Chambers School
- United Cerebral Palsy of New Jersey
- Jardine Academy
- Cerebral Palsy of Middlesex County
- Ocean Housing Alliance
Thinking about the range of service providers in New Jersey, are there needs that you think could be addressed particularly well by collaborative relationships between Matheny and some of those other providers?
- Medical services advocacy
- Medical coordination
- “Other agencies could benefit from Matheny’s model of care.”
- “Matheny needs to become more visible in the general medical community as a unique resource. Matheny could provide grand rounds and introduce physicians and nurses to best practices in communicating with persons with developmental disabilities.”
Do you feel that human service and health care organizations know enough about the service needs of people with developmental disabilities in New Jersey in order to effectively plan and implement services?
36% yes; 64% no
What is lacking on the part of human services and health care organizations with regard to the service needs of people with developmental disabilities?
- “There is a general understanding of the complexity of the issues faced by those with developmental disabilities and that these are lifelong struggles. There needs to be greater awareness of what families deal with on a day-to-day basis.”
- “There is an assumption that all people with disabilities have similar needs, and there is little understanding of different types of disabilities and how there may be special needs, i.e., a child with autism may not have the same medical, physical, cognitive or social needs as someone with spina bifida.”
- “Acute care hospitals have no idea about the needs of people with intellectual and developmental disabilities and certainly do not know how to take their unique needs into consideration when providing care.”
- “Coordinated care seems to be lacking.”
- “The medical profession is geared to acute, rather than chronic, illnesses. Even within chronic illnesses, the most frequently discussed are diabetes, hypertension and other medical conditions. Children and adults with lifelong developmental disabilities are often without medical champions or even healthcare providers who take an interest in their complex needs.”
- “The movement of individuals from developmental centers (institutions) needs to be accelerated, and adequate funding needs to be given to providers to ensure an ongoing ability to treat this vulnerable population.”
Matheny recognizes that it cannot provide care for the entire disabled population. We do everything possible to ensure that future healthcare professionals understand how to care and treat persons with disabilities. As part of that effort, we have established a program that provides training for medical and dental students from Rutgers Medical School, who rotate through Matheny on a weekly basis. Matheny also has internship and training programs with more than 100 colleges and universities.
Helped by a grant from the Robert Wood Johnson Foundation’s New Jersey Health Initiatives program, we have developed, tested and implemented a model for improving the quality of transitional care for persons with chronic health issues and medical complexities associated with developmental disabilities. Our partners in this project are Morristown Medical Center in Morristown, NJ; the Robert Wood Johnson University Hospital in New Brunswick, NJ; and Newton Medical Center in Newton, NJ. In addition to improving the care of our patients when transferred to acute care hospitals and reducing the number of readmissions, this project has educated staff members at acute care hospitals so they will be more comfortable treating patients with disabilities. It has not only helped Matheny patients but has also benefited patients with disabilities who are admitted to the hospitals from families and other institutions.
Numbers of readmissions within 30 days of discharge from the acute care setting, as well as numbers of emergency room visits within 30 days of discharge, serve as a primary outcomes measure of the transitional care program. In the first 10 months of the program, the hospital readmission rate dropped to 7.1% from 25.05%.
The Matheny Institute for Research in Developmental Disabilities conducts research that helps people with developmental disabilities and their caregivers. We publish our research in leading medical journals and in leading publications in the field of disabilities. We present our research at regional, national and international conferences and often address medical schools and government-sponsored meetings. And we create multimedia training tools to help medical schools in preparing their students to care for and treat persons with disabilities.
We were responsible for the passage of a law in New Jersey that provides families of persons with developmental disabilities greater autonomy in making decisions about participation in potentially beneficial research. Being aware of an inconsistency regarding guardian requirements contained in two previous pieces of legislation, our research director and corporate counsel brought this issue to the attention of New Jersey State Senator Christopher Bateman. Senator Bateman, along with Senator Robert W. Singer and Assemblywoman Mila M. Jasey, sponsored bills that resulted in the new law.
In addition to clearing up the previous inconsistency, the new law expanded the range of studies that are allowed to include ones that might not have direct benefit to the individual participant, but might have broader benefit to persons with disabilities. The practical benefit of the new law is that families of persons with developmental disabilities will have the freedom that other families enjoy to weight the risks and benefits of an appropriately reviewed and approved research study. And they will make their own informed decisions about whether or not their family members will participate.
Matheny has also created an online database of dentists in New Jersey who serve people with developmental disabilities. This was made possible by a grant from the New Jersey Council on Developmental Disabilities (NJCDD). That database is available at www.disabilityhealth.org/dental.
Organizations Contributing to the Community Health Needs Assessment Survey
Alliance for the Betterment of Citizens with Disabilities, New Jersey
The Arc of New Jersey
The Central Palsy League
Cerebral Palsy of New Jersey
Maternal and Child Health Consortia, New Jersey Department of Health
New Jersey Association of Community Providers
New Jersey Department of Human Services
New Jersey Office of Child Health Services, Department of Children and Families
Passaic County Elks Cerebral Palsy Treatment Center
Spina Bifida Resource Network
United Cerebral Palsy of Hudson County
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