February 17, 2023
By Colleen Scott, NYSOFA Advocacy Specialist
Intellectual/Developmental Disabilities (I/DDs) are differences that are usually present at birth and that uniquely affect the trajectory of an individual’s physical, intellectual, and/or emotional development. Many of these conditions affect multiple body parts or systems.
Intellectual disability starts any time before a child turns 18 and is characterized by differences with both:
- Intellectual functioning or intelligence, which include the ability to learn, reason, problem solve, and other skills; and
- Adaptive behavior, which includes everyday social and life skills.
Approximately 6.5 million people in the United States have an intellectual disability. It is the most common developmental disability.
Older Adult Caregivers
Approximately 1 million individuals aged 60 or older in the U.S. are providing care for an adult with I/DDs such as autism, cerebral palsy, or Down syndrome. While individuals with I/DD are experiencing longer life expectancies, they are also faced with health disparities and inequities which negatively impact their quality of life as they age.
New NYSOFA Resource to Help
Older adults providing care to someone with I/DD may feel overwhelmed by the prospect of planning for the future. NYSOFA has recently developed a guidebook to help, and we encourage aging services providers to share this resource with the community.
NYSOFA’s Future Planning Guidebook For Older Caregivers of Adults with I/DD connects older adult caregivers with information and resources to begin the process of long-term planning. This includes financial and legal tools as well as supportive programs and services. Please read this resource and share it with anyone who may need assistance planning for the long term needs of a son or daughter with I/DD.
Did you know?
- According to the CDC, individuals with disabilities have higher rates of depression, obesity, diabetes and heart disease.
- In New York State, of those utilizing Medicaid, the top three types of I/DD are Autism, Cerebral Palsy and Mild Intellectual Disabilities.
- According to the National Council on Disability (NCD), adults with developmental disabilities are at risk for hearing and vision difficulties, cardiovascular disease, obesity, seizures, mental health and behavioral problems, poor oral health, and poor general fitness.
- The NCD also reports that primary care physicians are not trained to provide needed care for this population, and insurance does not adequately compensate health care providers for the time required to provide care and care coordination.
Resources
In addition to NYSOFA’s Future Planning Guidebook, please see the following resources for further information:
- Services and supports provided by the Office for People With Developmental Disabilities (OPWDD) or OPWDD service providers can help individuals live in the home of their choice; plus, find employment and other meaningful activities in which to participate.
- The Disability Information and Access Line (DIAL) is an easy way to get connected to the services you need. The line is available Monday through Friday from 8 a.m. to 9 p.m. Individuals can call, text or videophone to 888-677-1199.
- Independent Living Centers (ILCs) provide an array of services that assist New Yorkers with all disabilities to live fully integrated and self-directed lives.