Below are topics that might be of interest to you as the parents, siblings and family members of individuals with developmental disabilities.
You may have just received the news that your child has been born with or has been diagnosed (before the age of 22) with one of the five types of developmental disabilities — mental retardation, cerebral palsy, epilepsy, autism or a neurological impairment. You might go through many emotions trying to discern what this means for your child and your family.
What can you do after the diagnosis to start seeking the right programs and services to support your child’s growth, potential and educational needs?
All of a sudden you and your family have a mountain of information to sort through. How do you prioritize?
To begin with, it is very helpful to select a single contact point to provide objective information to you about the different agencies and programs available to your loved one, and your family, as well as someone to help you through the referral and application processes. The Central Intake or Admissions Department is the best source for educated and caring individuals to answer your questions. Call (716) 504-2617 ext. 230 for more information.
Many counties offer Early Intervention Services for newborns to age 3. After that you must select who will coordinate the services for your child. This is an important relationship and one that should be established early on in the diagnosis of your child. Research is critical: interview different agencies, other parents and physicians; look in the phone book and search the Internet.
As your child ages, issues of supportive services, guardianship and school-to-work transition will become important for you and your family to discuss.
This information is intended to provide you with many of the steps and definitions that will be helpful in advocating for the advancement of your child.
The first thing an admission department will discuss with you is eligibility. They provide you with the necessary paperwork and advice to determine eligibility for services if you have not already done so. Do not be afraid of the word Medicaid. In New York State, Medicaid is the system that funds the majority of services for people with developmental disabilities.
The philosophy behind service coordination is that everyone with a developmental disability (referred to as a consumer) should have an opportunity to determine the direction of his of her life.
The role of the service coordinator is to seek out programs for consumers focusing on: individualization, independence, inclusion and productivity. Specific services and supports range from assistance with financial matters, arranging respite, securing leisure and recreational activities, identifying environmental modifications and adaptive equipment if necessary, and providing in-home services, etc. Enabling individuals to make their own choices promotes change, growth and the ability to meet new challenges every day.
Supportive services provides assistance to families with a family member with a disability or to individuals with disabilities who live on their own. A variety of options and supports are available that include: recreation (youth and adult); guardianship; self advocacy; exceptional parenting; home care training/life planning assistance and residential habilitation.
Guardianship is a legal proceeding brought in Surrogate’s Court which designates a parent, relative, friend, or an organization, to act on behalf of an individual with a developmental disability who is incapable of managing his or her own personal affairs without assistance. Guardianship enables parents to ensure that they, or other designees of their choosing, can act as advocates with legal authority on behalf of their children in protecting their rights, fostering their quality of life. The process empowers a guardian to maximize all available resources for the benefit of the person with a developmental disability.
In New York State, parents of persons with a developmental disability are considered the natural guardians of their children, as with any other child, until the child turns 18. After a person turns 18, he or she is deemed legally competent. Guardianship authorizes parents to exercise legal supervision of their children and provide them with lifetime protection even after they reach the age of 18. Once guardianship is obtained, it will extend for the lifetime of the individual, until terminated by the court. Legal guardianship cannot be granted from, or specified in, a will.
Many parents are unsure of what services are available for their children upon graduation or aging out of the school system. As your child is entering senior high school it is helpful to select a school involved with a school-to-work transition program. This partnership between the school district, students, parents, teachers and community-based developmental disability professionals will greatly enhance a student’s success as they leave school and enter a career or the adult service system. Creating a link to these services will put a parent’s mind at ease.
One such program is called S.T.E.P.S. (School Transition and Employment Program for Success) of Opportunities Unlimited of Niagara and can provide assistance to your students. The transition exposures have given many individuals the needed training and work skills to be successful in a job after graduation.
Lastly, remember you are not alone. There are caring, dedicated professionals across the region ready to create lifetime opportunities for people with developmental disabilities and their families. Many organizations even offer family support groups that can be a wealth of information.
For more than 50 years Opportunities Unlimited of Niagara has been enhancing the lives of individuals with developmental disabilities and supporting their families by providing innovative services and programs. Our agency provides an information newsletter several times a year to the parents and siblings of the individuals for whom we provide services. Click here to read a recent sample.
Our employees and volunteers look forward to serving you and your family members. Please call us at 504-2617 for more information.