Too long to wait!

Dear Friends, Colleagues, and “Too Long to Wait” Advocates –

January is here and most of us are hard wired to think anew about the future; possibly even a positive spin on health and politics. 

As I write, the legislature is preparing to convene, newcomers are pondering committee assignments, and no doubt, deals are being designed around available resources, dreams, and schemes.  Cynics imagine the worst, optimists search for silver linings. 

We at the ncwaiveractionteam.com are simply preparing to do the work necessary to move our ideas, agenda, and mostly our stories, forward.  We are in discussions with the Arc of NC, the NC Center for Developmental Disabilities, and several other organizations who work with and monitor the legislature as well as recommend to state agencies.  There is always work to be done and we are – in spite of the virus – trying to connect in every way possible with you and our fellow advocates.

Here is what we are hoping:  As part of your new year’s resolutions, you will make contact with your new and returning legislators, both House and Senate. Before the session begins, write them a note of encouragement for 2021 and educate them about the Registry of Unmet Needs and how a waiver would change the life of your child.  If you know a County Commissioner, this is also an important contact as unified Commissioners state-wide are a big legislative influence.  

..You might share with them President-elect Joe Biden’s plan to cover the federal portion (2/3 Medicaid match) of all I/DD service wait lists and ask their thoughts on North Carolina’s (1/3 role).

..You might plumb their awareness of the shifting sands of our MCO’s (Managed Care Organizations) and how this might impact day to day services going forward.  Several counties are exploring disengagement and transfer to other MCOs, which may end up in six months on the desk of DHHS Secretary Mandy Cohen for final decision.  

..As state mandated Medicaid Transformation unfolds, how do they see this impacting behavioral health concerns for those with I/DD, some with dual diagnosis?

..We hope you will engage them on the wait list and this web site.  14,000 citizens waiting is an embarrassment for our state.  Share with them how many are from your county and how long the average wait is for them.  Your MCO knows these numbers.  Request their ideas on how to advance your story and provide them with information they need.  

..Yes, your story!  How will you frame it?  How long have you or your loved one waited and what have they (or you) missed during that time.  What lies ahead for them?  What are your hopes and dreams…and fears?  Examples, written and video, are in the family story section.  

..You will capture your story and your conversation with area decision-makers and send it to your area newspaper.

..You will copy it to your area radio and TV stations.

..You will send it to us to publish or pass on.  We have resources that can edit written or even video stories and combine them with those of other advocates.  The more stories, the more we can move the awareness and thinking of those who – in the end – influence legislation and funding for the Registry slots in your county and our state.  

This is the work we imagine in early 2021.  As the virus and social distancing evolve, we hope to re-engage regional, in-person rallies.  We hope to grow the number of legislators who share our awareness of the potential in those for whom we advocate.  But our work begins with you.  Let us know how your 2021 can help us all move forward!  Or, how we can help you organize advocacy.  It takes a village and we are all part of one.

Yours in advocacy,

Bill Donohue

The Waiver Action Team