Recently, we met with a family that was looking to relocate to our area from out of state. They have a son with a disability and wanted to know about services and funding. His disability is quite different than Mary’s as his challenges are physical and Mary’s are primarily cognitive (and behavioral). Because of this and the fact that he is 17 years younger than Mary, we didn’t know all of the answers to their questions. But we knew people who did know the answers and quickly made some phone calls. We called our current supports’ coordinator as well as people who have worked with Mary in the past. Everyone was willing to help.
Many of our blogs in the past have been focused on things like perspective, reducing stress, emotional health, extended family relationships and, of course, how all of this affects our marriages. We have advocated staying connected with other parents as there is a tendency for families affected by disability to become isolated. One piece of practical advice that we’ve learned through the years is that it is also important to stay connected to the government and school officials who oversee our child’s access to services. Learning to navigate the maze of government services, medical eligibility, county programs etc. can be overwhelming … and confusing. Your county advocate (in Lancaster it is called a “supports coordinator”) can be very helpful to you as you navigate these “unknown territories”. On more than one occasion, it was Mary’s supports coordinator or school administrator that suggested and obtained a special service for Mary, even when we didn’t request it.
Government workers who oversee the care of a child with disability sometimes get a bad rap. They are frequently overworked and are required to comply with state guidelines that often don’t make sense to us as parents. Sometimes it feels like you are working against them to get appropriate services for your child. But we strongly encourage you try to cultivate a good working relationship with them; to try to see yourselves as being on the same team. They can be a valuable resource to you, now and in the future. Know who they are, who they work for and the role they are to play in your child’s life. If you don’t seem to “hit it off” with your current support person, in most states, you can request a different individual. The “system” is a lot easier to navigate, if you have someone on your side to help you work your way through the uncharted waters.
So, how are you doing with your child’s support person? We’d love to hear feedback on this.
