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Helping Each Other Navigate the IDD World


From the Wake County CFAC:
Shortage Crisis of DSPs in IDD Community

There are currently 20,000 individuals with intellectual and/or 
developmental disabilies (I/DD) receiving services through North
Carolina’s Medicaid-funded Innovations Waiver. There are over 13,000 on
the Innovations waitlist; over 9,000 of those on the waitlist receive no
LME-MCO funded services and the others receive minimal services.  
READ MORE HERE:  Alliance Wake CFAC DSP Wages - May 2020

Nothing About Us, Without Us

Due to the recent court case, Samantha R., et al. v. North Carolina, et. al, and it being an election year, Next Step has begun an Advocacy Project.

(From the Disability Rights NC website) – “The case, Samantha R., et al. v. North Carolina, et. al, was filed in Wake County in May 2017. The suit claimed that North Carolina does not offer enough community-based supports for people with I/DD. Many people with I/DD would prefer to live in their home communities but have been placed into institutions in order to receive services……… The judicial order declares that the State and DHHS have violated a legal mandate – passed nearly 30 years ago – that people with disabilities may not be forced to live in institutional settings in order to get the services they need.”

NC has not served our loved ones with an Intellectual/Developmental Disability (IDD) who are on the Innovations Wait List formally called The Registry of Unmet Needs. This list is for people with disabilities who do not have the Medicaid Program called Innovations Waiver. This program waives some of the Medicaid rules so people with IDD can receive Home and Community Based Services they need to live outside an institution. Currently, about 12,500 people have the Innovations Waiver and 14,000 are on the Registry of Unmet Needs in NC.

NC provides 1/3 of the funding for the Innovations Waiver while the Federal government provides 2/3 of the funding. The past Democrat controlled legislature under-funded this program when it began, and the current Republican legislature has not provided the funding to keep up with the population growth. Both political parties are complicit in under-funding services for people with these disabilities.

We are asking the State of NC to fund a Family Support Waiver (FSW) that would meet the basic needs of people on The Registry of Unmet Needs. An example of an FSW would be the Indiana Model. A detailed explanation of this model can be found HERE.

We need your support on this project to let Legislators and the Governor know that a FSW would benefit virtually all of the people on the Registry of Unmet Needs and their families. Please take a moment to write your Legislators and the Governor to let them know how you feel about this critical issue. Ask your family, friends, and neighbors to join this project.

There is legislator contact information and sample letters under the Advocacy tab on this website.

Thank You,


Autism Society of NC,  Advocacy 101 Tool Kit – While ASNC advocates on behalf of people with autism and their families, it is critical for people to advocate for themselves. Making your voice heard on issues that are important to you is the focus of this handbook. Click Here to get your copy of this pdf.


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