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Letter: MH/DD/SA waiver a mistake

Posted on April 28, 2011 by Staff

This letter comes to you from someone who has lived her whole life with cerebral palsy. As a 52-year-old self-advocate, and teacher of self-advocacy to people with intellectual/developmental disabilities (DD), I am going to explain, through the writing help of my assistant, my concerns related to the Medicaid 1915 (b)(c) waiver. 

Even before this change was suggested, it had become a growing concern for me that mental health (MH) and substance abuse (SA) were linked with DD. Unlike MH, where management can be found through medication and therapy, and SA, where treatment can bring lasting results, people with DD do not recover; indeed, they progressively get worse. This waiver, in its full title, is a recovery waiver. How does that apply to DD? Please keep in mind that people with autism, a rapidly growing concern for the population of our country, are covered under the waiver as people with DD.

Managed care will not work for people with DD. We have unique problems, which benefit greatly through specialized therapies, which are currently covered, but will apparently be eliminated with the 1915 (b)(c) revision.

People with DD who’ve never lived out on their own need employment counseling to gain independence and become contributing members of society. They need to know about safe and affordable housing within communities that are friendly and accessible. These are among the important jobs of case managers, who provide in-home, face-to-face assessments of needs with knowledge of their clients’ communities.

However, it appears that case managers will be eliminated and instead care coordination will be the process for accessing every need. Does this mean that every time I need something I will have to call someone who has no knowledge about my needs and me and I will have to explain my situation or wait for him/her to familiarize themselves with my file? This sounds like a nightmare – especially for the large population of people with DD who struggle to speak! How will they receive the care they need without hours of exasperation?

Do these questions help you understand that DD is different from MH and SA and needs to be separated from them and treated according to its own special needs? Please recognize the damage (and personal disasters) that will inevitably follow by accepting this waiver for people with intellectual/developmental disabilities. I implore you to carefully consider the peril you are placing before a population of people with very little voice but tremendous needs. In conclusion, statewide acceptance of the 1915 (b)(c) waiver as it stands is a mistake. It will not help the population of DD; it will hurt us, simply because our health and safety will be sacrificed. 

Ellen Perry
Carrboro

1 thought on “Letter: MH/DD/SA waiver a mistake”

  1. Nicole Smith says:
    May 5, 2011 at 8:46 am

    I agree with the information provided. I am Case Manager for the IDD population. I have a case load of 39 individuals. Having a case manager is very essential to the ones I serve. Some may think that Case Management only provides monitored services, but we do a lot more . I meet with my individuals each week, make frequent phone calls, refer them to other services and receive phone calls all times of the night, and even act as direct care staff if needed. Many of my individuals have no family and rely on their case managers for assistance. This waiver is not only a mistake it has no understanding for the needs of the individual in the IDD poplulation. I ask, I beg the that this waiver not pass. I went through the reform and that was a mistake please dont make another mistake with this waiver.

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