08 May 2012

Parent Perspective: Parent Letter from K.Feller

A couple of months back, I received a heartfelt letter from a local special mom of two boys with Autism to deliver and share with Dr. Pat Porter in one of my meetings. I am posting with her permission. Thank you Kimberly!

Parent Perspective

March 1, 2012

RE: Concerns with NC HB 916

My name is Kim Feller and I live in Wake County. I am writing to you because I have two sons who both have autism and are covered by the Medicaid CAP Waiver program. Nick is 14 years old and James is 11 years old. I am concerned about the NC HB 916 which will greatly affect services. Both of my boys participate in several different therapies including occupational, speech, and social skills therapies. Also, they both take different medications for the treatment of aggressive behaviors, anxiety, and seizures. My youngest son who is 11 years old recently had a temporary residential placement at the Murdoch Developmental Center in Butner, NC where he stayed for three months. He was placed there due to aggressive behaviors which we were unable to handle at home. He is living back home again only because we have home staff provided through the Medicaid CAP Waiver program. We feel very fortunate that both our sons are currently covered by the Medicaid CAP Waiver program. The CAP Waiver program has been critical in providing our boys Home and Community services as well as funding for the aforementioned therapies, medicines, and residential services. These services support individuals in their home and community and avoid more costly institutional settings. Provider agencies just took an almost 3% rate cut on November 1, 2011, in addition to a 5% cut a few years ago. We are concerned that the cut to Home & Community service hours will make it difficult to retain the quality service providers we need to care for our boys. Working with children who have autism requires a certain level of commitment, sensitivity, and resilience which must be compensated accordingly. Also, the DHHS has recently implemented new limits on the number of hours our sons can receive. This concerns us a great deal because our youngest son needs constant supervision. If we don’t have enough home support hours the chances of our son reverting back to his prior aggressive behaviors will be greatly increased. It is much more economical to pay home staff than it is to pay for a residential placement!

The 1915 (b)(c) managed care waiver proposes that a single entity with a financial interest to keep funding low will determine eligibility for services, control who can provide services, develop the Person Centered Plan, and decide the level of funding. This is of concern to us because the decision makers would work for the Local Management Entity (LME) which has a financial interest to contain costs. There needs to be a decision maker representing solely the interests of the person with the disability as is currently happening with the Case Managers. The new plan should recognize the integrity of the Developmental Disability model by excluding Case Management from the Managed Care Entity and separating Developmental Disability from Mental Health and Substance Abuse. Developmental Disability is not an illness, and therefore should not be combined with Mental Health and Substance Abuse.

We appreciate any efforts you can make toward avoiding cuts in Home & Community Service hours as well as excluding Case Management services from the Managed Care Entity.

Thank you for your time and efforts.

Sincerely,
Kimberly H. Feller
contact info...

* If you are a parent or caregiver with a story to contribute, have correspondence exchanges  with legislative members you would like to share, please contact me at no2nchb916@gmail.com.