Colleen is the parent a 12-year-old son and CAP recipient with multiple diagnosis and special needs including an auto immune disease and Traumatic Brain Injury (TBI) attributing to many medical, developmental and behavioral issues. She also has another child with needs who is not being served. Posted with parent permission.
Colleen is in NC House District 36, Senate District 17 and will fall under Alliance Behavioral Health Care LME (formerly the Durham Center) upon implementation.
Legislative Correspondence
from another Parent Perspective
From: COLLEEN Thu, May 24, 2012 at 11:12 AM
Dear Representatives:
As a constituent, I am asking you to reconsider the move forward with the current HB 916 until there is a restoration of Independent Case Management, establishment of a third party unbiased binding conflict resolution entity and an unbiased SIS evaluator not employed directly by the MCO. There are more issues that are relevant to this Waiver that are concerns to families like mine as well. Habilitative services is needed to ensure individuals the ability to provide some independent level of care if not complete independence, later on. Enhanced Personal Care is also imperative to families that have children with more involved personal care needs involving GI problems, medication administration, and intense behavior supports to name a few. Eliminating these services will create a bias against these more involved children as staff will not work and pick up cases that require much more effort and unpleasant things to deal with when there is no incentive to do so. The necessity of CAP services to enable families to function and allow siblings to have some normalcy, is imperative to allow for a system that is not burdened down the road with institutionalized adults and broken families. Lastly, appropriate CAP level services in place provides the support families need to just be a family. I will close with a personal example of how these services are needed to just allow families to deal with every day things that happen in all our lives, but can become a crisis without support from CAP:
CAP services are imperative for families like mine. We have more than one child with special needs, but only one with CAP. When my husband's father just recently passed away, we would have been in a tailspin without our CAP workers. One of us would have had to miss all the planning, viewing, hanging out grieving with family and seeing family members that live out of State who we hadn't seen in many years, if it weren't for the supports we had. My son could not handle all the noise, chaos and environment of funeral planning and the viewing. His CAP workers and I brainstormed how to help him handle the loss of his grandfather and explain this to him. We came up with a wonderful concrete picture that he grasped. The CAP workers kept him with them at home while we traveled to another town in NC. They continued his programs/routine as we went about the various duties and family commitments involved in this type of loss. We decided it was best for him to not attend the viewing as it might confuse him. We explained to him that he would go to a "Funeral" and it was a place we would say goodbye to Grandpa and see his casket, which was a "car" that you ride to heaven in and we wouldn't see him again till we moved there too. He then came to the funeral with his CAP worker and she was able to keep him quiet and help him participate in this aspect of it all. She did various sensory strategies to keep him sitting still and attending, bringing along little hand toys, sensory brushes etc. to help him remain there. He did! To our amazement and thankfulness to his 10 year CAP worker who knows him so well, she had just the right strategies to enable him to do this. We all stood together as the casket was placed into the hurst and we said together "there goes Grandpa in his casket, he's riding to heaven". He understood. He hasn't asked for Grandpa again which is unusual since he saw him every Sunday and looked forward to his "tickles" and cuddling in the rocking chair. So we know he got it and is at peace with it. We are so thankful for our CAP workers and how they rallied behind our family and provided the supports that were necessary to enable us to spend long days with family, grieve and have this time together with extended family.
That is just one example of what CAP does for families like mine and that's not addressing all they have done habilitatively for my son, which I could also write personal examples of such as his ability to now toilet, feed and bath independently - we are so thankful for CAP.
Thank you for your continued commitment to do what is right and to forge a plan that makes sense for our voiceless children caught up in fiscal difficulties that are not their faults and should not balanced on their already burdened backs.
Respectfully,
Colleen
