NC Innovations Waiver: Not So Unbiased. It Matters the Disorder!?

There is a waiting list for the Innovations Waiver. I don’t know about you, but when I go to the grocery store and I am in line to check out, if someone butts in front of me without my permission (because they have one item) I call that “cutting in line.”  Apparently “cutting in line” is allowed in the Innovations Waiver.

The North Carolina Medicaid Innovations Waiver 1915 (b)/(c) Medicaid Waiver for MH/DD/SA Services supposedly set in place to serve those Medicaid recipients suffering from mental health, substance abuse, and developmental disabilities (MH/DD/SA).

Basically, if you are a woman in NC and have the possibility of having a baby, go ahead and apply for the NC Innovations Waiver at age 15.  Since there is a 7-10 year waiting period, if you happen to give birth to a developmentally disabled child within 7-10 years, then your child will be covered by the Innovations Waiver.

On the other side, if you do not apply pre-pregnancy, your developmentally disabled child will be 7-10 BEFORE the child would be covered by the Innovations Waiver.

On CNN today, I heard that treatment for an autistic child runs approximately $80,000/year.  That number is astronomical. If I made millions, MAYBE, $80,000 would be nothing to me.  But let’s be realistic.  How are these families with autistic children paying $80,000/year for health services? I know for a fact, I would not be able to fund that amount.

So, what if you have a “moderately” autistic child with limited funds? You would think that if you place your child on the Innovations Waiver at age 0, that your child would receive Waiver services within 7-10 years, according to the “wait list,” right?

Wrong.  The Innovations Waiver waiting period is not based on date. As in if you file your application in 2001 and another person files in 2005, the 2005 applicant may be bumped above you depending on subjective ideas on what determines “moderate” or “severe.”

Let someone intricately involved with the waiver explain:

A wonderful woman with an adult, mentally-handicapped child emailed the following to me:

“I was quite surprised to learn that the Registry of Unmet Needs (waiting list) for the NC Innovations 1915(c) waiver is NOT a date based, first come/first served, list by each of the 11 LME/MCO’s.  It is a date based listed by each and every one of the 100 NC Counties.  I learned this at the SMC (Smoky) Board of Directors meeting last Thursday (3/28/2013.)

If you are FIRST ON THE LIST in a County that is “over-served” based on “per capita” allocation of waiver slots, then you will not get one of the slots that were just allocated to your LME/MCO.

Think about that.  Here in Alexander County or Caldwell County a lot of people (that is who the “per capita” is: people) have lost jobs and moved away.  Those of us with slots, didn’t move.  It now looks as if Alexander County and/or Caldwell County are over-served!  And, think about this, those of us with slots CANNOT move because the slot belongs to the LME/MCO and not the person.

I will never understand how people with power can make such hateful decisions.  Who would have decided 100 lists is the correct way to get services to IDD people who are waiting for those services and who are eligible for “institutional level of care?”  I am begging you all to be the “truth speaking to power.”  I have argued repeatedly that the only list that should exist is a statewide list that is date based WITH exceptions for URGENT severe needs or emergencies.

Truth Speaking to Power:  Call the Governor!  Constituent Services:  919.733.5811.  I called.  I said:  “I have an urgent Medicaid issue I would like to make the Governor aware of.”  I explained the problem with 100 lists.  I asked the Governor to find out who the actual live human being was that made such a hateful, mean spirited decision.  I asked for an opportunity to speak with the Governor.  I also explained that I was going to send an email and I hoped other people would call, too.”


Maybe the Innovations Waiver allows “cutting in line,” but I still think its rude. A moderately severe autistic child needs help too.  And who determines which child is “moderate?”

About kemanuel

Medicare and Medicaid Regulatory Compliance Litigator

Posted on April 2, 2013, in Division of Medical Assistance, Health Care Providers and Services, Medicaid, Mental Health, Mental Illness, NC DHHS, North Carolina and tagged , , , , . Bookmark the permalink. 13 Comments.

  1. If you think that all of this creates a problem for Autism, imagine what the brain injury community suffers each and every day. It is the most quickly growing disability in NC (although the new helmet law, should it pass will probably end up causing more people to die from motorcycle accidents than to survive for the State to help…maybe there’s method to their madness) and also the least served disability and HAS BEEN FOR YEARS!! The current laws in DHHS also discriminate against those that are more than 22 years of age when they suffer their injury. If you think this is bad, the folks that suffer “acquired” B’s as opposed to “traumatic” BIs are even more ignored.

  2. Michelle McCullough

    While some of the information posted here is true, it is written in an inflammatory way.

    The Innovations Waiver is based on date, but with some exceptions. Counties are required to hold some slots open for high needs individuals. The comparison to waiting in line at the grocery story is invalid, because rarely does buying groceries involve life and death situations.

    Before taking these writings at face value, I encourage readers to check their facts by calling Western Highlands where their very capable staff will answer questions and clear up any misinformation. Citizens can direct their concerns and questions to the Grievance Coordinator at 828.225.2785 x 2107 or email at

    • Michelle,

      Thank you so much for your input. Absolutely, I hope readers check the facts. Sadly, Western Highlands is an MCO with its own bias facts (similarly to what you accuse me of…but we will allow the readers to decide). Also, Western Highlands only services 8 counties out of 100. So Western Highlands’ “very capable staff,” as you say, can only clear up information for 8 counties. But opinions from others are always welcome.

  3. Wendy Reibsamen

    What do you recommend we do to get the waiver? I’m a parent of 2 severe non-verbal children with autism and we just moved here in December. We had a meeting with our MCO ECBH and they said it is IMPOSSIBLE for us to get the waiver any sooner. Why?

    • Wendy,

      Sadly, there is a wait list for the Waiver.

    • It is not impossible, just very, very difficult. It can be done though, if your children meet certain criteria. If either or both of your children pose a danger to themselves or others, you may be eligible for an emergency waiver. It involves a lot of documentation, a lot of advocating, and a lot of headaches, but I know of one family who was successful after about a year and a half of pushing. We followed their blueprint and managed to get the emergency waiver in about 9 months. A lot better than a decade! Just keep in mind you really have to meet the criteria to even be considered. And frankly, it should be difficult to bypass others. It’s pathetic that the wait is that long, but that’s the world we live in.

      The exact wording is:
      A person is considered to have emergency needs
      when the individual meets the following criteria and
      no other service systems
      can meet the identified
      The individual is at significant, imminent risk of
      serious harm which is documented by a
      professional and meets one of more of the
      following criteria:
      • The primary caregiver(s)/support system
      is/are not able to provide the level of
      support necessary to meet the person’s
      exceptional behavioral and exceptional
      medical needs and documented risk
      (…there’s more but it involves things like abuse, neglect, social services, etc.)

      See pages 59-62 of this document for more details:

      • Wendy Reibsamen

        My child fell and broke his back. Could you please contact me and share with me more details on what steps you took to do this?

      • Email me and I can fill you in on the details. The first part of my email address is “nildesperandum” and the domain name is “,” with an at sign in between. (Sorry, trying to foil the spam bots….)

  4. My 22 yo daughter on the ASD spectrum has been on the wait list since March 2010. I have done lots of research about the process and am also very frustrated with the “by county” allocation. Additionally there have been no NEW slots since 2009, only re-distribution of transitional slots that have become available due so someone moving from the state, dying, or aging to the point of needing a higher level of nursing care. NC did budget and Federal DMA did approve an additional 250 slots which will be distributed in Jan 2017. My MCO, Trillium, got only 30 of the 250 for its 24 counties. I don’t anticipate that my daughter will get one of these either because we live in Craven County and it is considered to be already over saturated. I do plan to try to speak with the governor whenever we find out who that will be about the unfairness of the distribution by county. I want to also address my concern with the transparency of the whole process because the MCO will not disclose where anyone falls on the wait list, stating that is could change daily with movement in/out of the particular county. With current database technology, I know this excuse to be invalid because a simple program could update nightly to let everyone know current placement on the list. Wonder if there may be some other reason for this lack of disclosure. Thanks for letting me vent.

  5. Hi, I’m sorry you’re having such a hard time with getting the innovations waiver. I feel like the list is inherently egregious, it’s a years long miserable list for necessary services for the most vulnerable among us. I’m so glad to hear you are utilizing our state reps and the governor to hear our plight. Many of the people on that list cannot speak for themselves and so we have to be a voice not only for our children/adults but for the people waiting without one.
    I wrote the governor regarding this issue and within a couple weeks my problem was solved. I may have written him daily for weeks but the squeaky wheel gets the grease. I had a binder full of different evals and letters from doctors and specialists to back up my request.
    I hope you find relief, comfort and a solution fast.
    Keep up the good fight

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