One of the biggest issues parents face is how to find reliable, knowledgeable respite providers. Although many parents are able to find funding to cover respite care, many of them do not use it because they cannot find people to provide it.
Under Star Kids, families can access in-home respite support. It is part of the Community First Choice funding and parents can see if they qualify for it through the assessment process. The managed care organizations do assessments for this at home.
Another way to access respite funds is through Non-Educational Funds from the school districts. Families can ask their school, usually the principle or vice-principle, if this is available for their child and what the process is to access it.
Many other families look for providers through home health agencies--this is a great resource as well.
I heard about this unique program where a parent found a way to help other parents find reliable providers. Throughout the years, she met many parents that had children with disabilities. She found that many of them were willing to care for other children with disabilities. She came up with the idea of creating a resource list of parent providers who were willing to take care of other children.
She created a form to help gather the important information. Then she created a list about the available respite parents. They were listed by areas of town they could help in, ages and diagnosis of children they were willing to care for, days and times that they were available, and their fees.
This project is a work in progress and probably always will be. There are constant changes and updates that need to be made to the listings. The challenge is to find the time to do all this and care for her own child. So far, this has worked well for many families and this work could easily be replicated in other areas of the state.
I wanted to share this information with others, hoping others will replicate this for their community.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.