The following is a guest blog post by Kokua Network contributor Heather Johnson.
In an ideal world, a child’s case manager and therapists would remain the same from the very first diagnosis until retirement. It’s frustrating to have to get a person reassessed and explain that person’s story, needs and progress to a new person at every new phase of life. Unfortunately, funding streams change as your child ages. Knowing where to begin is sometimes the hardest challenge. This blog is in no way a comprehensive guide to all of the service options available to you, but rather serves as a jumping off point; a place to begin.
Birth-3 Early Intervention
When you start to suspect your child might need some additional supports, the first thing to do is get him or her assessed. Your family doctor is a good place to start, however, you can also go through your county Mental Health/ Mental Retardation (MHMR) department. This assessment will determine what services your child needs, such as occupational therapy, physical therapy, speech/language support, hearing and vision support, and behavior services. Identifying your child’s need early and beginning services at this age is crucial; many symptoms and characteristics of many disability diagnoses can be alleviated or reduced if they are treated early.
Age 3-5 Preschool
After your child has aged out of early intervention but before he or she has started kindergarten, services are accessed through your county’s intermediate unit if the child has a diagnosis of Intellectual Disability. The intermediate unit can help your child continue the services they had in early intervention, as well as re-assess to see what needs have been met and what still needs support.
Not all children who are eligible for services in Early Intervention qualify for preschool supports, so getting a new assessment at this time is critical. If your child does not qualify for services through the intermediate unit but you still feel supports are necessary, don’t give up! Most qualification decisions can be disputed, or services may be funded through private insurance. If you hit a road block here, reach out to your local advocacy group for help.
Age 5-21 School
Once your child is in school, the district is required by law to meet his or her instructional needs, whether it is one of the services listed above, or others such as adaptive equipment, specialized instruction, or placement in a private school. Unfortunately, it can sometimes be a fight to get these services in place. Educational advocates are available to help you navigate through any problems, if necessary.
If your child has an ID diagnosis, another resource for you now is supports coordination services,. To register with the county for these services, call the intake specialist. You’ll have to meet with the specialist, provide documentation, and choose your supports coordinator, who will help you to create your child’s Individualized Support Plan. Although the school district is responsible for providing services, your supports coordinator can help you find things like activities, summer camps, support groups, advocates, and in some cases help with funding assistance.
If you don’t choose to register your child with the county during elementary and middle school, please do so by the time her or she turns 18. The better the county is aware of your situation post-graduation, the more likely your child is to receive funding, and your supports coordinator can help you through the transition from school to adult life.
21 and on Adulthood
Once your child turns 21 her or she is no longer entitled to any services. The state and federal government have funding programs, called Waivers, to help pay for services your child will need to lead a normal life, such as day programs, residential placements, in-home supports, transportation and respite. These funds are allotted based on need, and the availability of funding will change based on government officials, number of people applying, etc. Financial qualifications need to be met to be eligible for these funds, including receiving medical assistance and having assets below $2,000. Your supports coordinator will help you apply for funding and set up services.
It’s a long and frustrating road to travel, but please know you are not alone. We are a strong, well-connected and knowledgeable community; help is always available to those who need it. If you need individual assistance or have further questions, you can always contact me, Heather Johnson, from The Arc Alliance, at 610-324-8307 or firstname.lastname@example.org.
Heather Johnson is a Supports Coordinator Supervisor at The Arc Alliance, a nonprofit organization supporting families and individuals of all ages with developmental and other disabilities. In addition to her personal experience as a family member of those with special needs, she has been working for 18 years in all areas of the special needs community. Heather is one of the guest bloggers who will periodically post information for Kokua Network members.