IEP information is vital for parents to successfully put an appropriate education plan in place for their school age children. Education, though, is only one of many important services that children with special needs will require throughout their life. Finding those services, and many times simply finding out what services are needed, is an ongoing project for parents of these children. The hunt for services and the hunt for living and support options is a seemingly never ending process.
Sources of Disability Information
Doctors and medical facilities are usually the first source of information and referral. Whatever diagnosis your child receives, medical providers are the first place that parents will begin to learn about their child’s needs.
Once your child begins school – which happens at age 3 in the early childhood program for many children with developmental disabilities – this will be the primary source of information for the next 15 or so years. Not only will the trained special education staff be a source of information, the administrative and program staff in the special education department will provide information on community, vocational, and other areas through the required transition planning component of each child’s IEP. Some schools do a better job of this than others, but schools are still the most readily available source of information for parents – until the child is no longer in school.
Parents should also be looking to disability groups (the Autism Society, Downs Syndrome Society, United Cerebral Palsy, etc) and parent support groups for additional sources of information. Parents can share their experiences, difficulties, and problem solutions with other parents, and often a parent group is the best way to find community resources that are not associated with the school system. Links to a few parent groups are here – Seek out others and learn from them
Maintaining Support and Information Resources After Graduation
Once a child has graduated from school, the toughest part of preparing for life begins – housing, income, medical support, etc are paramount at this time, but without the structure of school and ready access to professionals, parents and their now-adult children can get lost and feel isolated. Maintaining connections with parent groups and disability specific groups is critical at this point. Parents also should lean on medical providers, attorneys, and state program case managers for advice, information and suggestions.
If they haven’t already done so, parents of adults with disabilities need to be seeking out legal and financial professionals for information. An attorney experienced with disability planning will help prepare plans for the care and support of a disabled individual after the parents’ are gone. A financial professional will help maximize whatever assets the parents have available.
Information rich websites
The ARC of New Jersey, which is one of Parker Counsel special needs law firm’s locations, provides regular, ongoing webinars to educate parents on a wide variety of topics, ranging from school services, to social security benefits, to housing, work, guardianship, special needs trusts, social and sexuality training, and many other aspects of raising and planning for a child with special needs. All of their webinars are archived and available for viewing at any time. Some of the material is specific to New Jersey, but most of it is applicable in any state. This is a great resource for parents and very easy to take advantage of. ARC of New Jersey Parent Webinars
Parents who are still in the thick of grade school and actually still need to learn about IEP’s find a wealth of information and resources at WrightsLaw. This is not a law firm, it is a repository of huge amount of information and guidance on special education law and advocacy. Created by parents who were navigating the special education system itself, this site has come to be the first stop for parents needing to learn about their child’s rights and how to work with – in spite of – their school.
Parents don’t always pass on complete or even accurate information, but there is no doubt that having other parents to lean on for emotional support, and to be able to offer that support to others who have situations similar to your own, is key to keeping perspective and to maintaining the energy to keep going. In person groups, facebook groups, listservs, zoome groups – all offer a way to make connections and find information that might not have come to light otherwise. The Parent Center Hub has search tools to help locate groups for every preference.
Need More Information?
Parker Counsel Legal Services is a special needs law firm providing estate planning, special needs trusts, guardianship, and more to families with children who have developmental disabilities. Offices in Texas, Massachusetts, New Jersey. To see how we can help your family prepare for the future, schedule a short phone call here, or call 833-Red-BOOT (833-733-2668) or email at legal@parkercounsel.com.