September 2023: Climbing the Same Mountain Together

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In this month’s edition of Meet The Need NC eNews:

Message from LAND, the Backbone of Meet the Need NC

Transforming the I/DD LANDscape in North Carolina

Help Wanted! Let’s work together to solve the DSP workforce crisis!

Image of blue mountains with the sentence "Climbing the same mountain together to transform the I/DD LANDscape in NC!

More and more we are hearing about the need for our intellectual or other developmental disabilities (I/DD) community to join together to find solutions. Having the ability for those with I/DD to live and work inclusively within their communities of choice throughout their lifetimes requires that we work together, even when our choices differ based on our particular situation. We are a community and will not rest until everyone has true choice with a robust array of services and supports for all in North Carolina.

During our Hear. Share. Act. Lunch & Learn webinar held in September, we learned more about the Direct Support Professionals (DSP) workforce crisis. It is important to understand that a DSP is key to many for being able to live in communities of their choice. DSPs in institutions and group homes typically receive better wages than those who work in community-based living environments. DSPs who help individuals live in their community are an essential part of being able to support those with the greatest needs in our I/DD community. Certainly, the lack of a well-paid, credentialed workforce is an issue not only in NC but also across the U.S.

Please take time to view the recording or slides from our latest Lunch & Learn presenter, Pat Porter, PhD, included in this newsletter. This is an excellent overview and deep dive into an issue that is key to our I/DD community, specifically that the need for a growing DSP workforce will require increased wages for those DSPs who give those with I/DD the chance to live and work in their communities and achieve the fullest lives possible.

This is your call to action! Join us in October as we brainstorm solutions to North Carolina’s DSP workforce crisis. We will pull out to include not only DSPs but also the I/DD workforce crisis as a whole. We are hearing evermore about individuals and families who understand developmental disabilities at all life stages. And if one is lucky enough to find a provider who accepts your insurance, waiting lists are very long.

It is essential we forge a path toward the future together for our entire I/DD community for those who walk this road in our shoes in the years ahead. We must be committed to making change together. By more intentionally weaving together our grassroots efforts across the state, we will drive a path for those who make the choice to live in the community rather than in institutions.

Thank you for your advocacy and engagement for those with I/DD and families to thrive, not just survive.

Meet The Need NC is an initiative to change the intellectual and other developmental disabilities (I/DD) landscape across the state and is funded by the North Carolina Council on Developmental Disabilities. Meet The Need NC is driven by the Leadership Alliance for Neurodevelopmental Disabilities (LAND), a program of the 501c3 nonprofit, Mental Health Transformation Alliance (MHTA).  Learn more about LAND at

September HEAR. SHARE. ACT. Lunch & Learn Recap

Topic: Help Wanted! The I/DD Workforce Crisis

On September 18, 2023, the topic of the Meet The Need HEAR. SHARE. ACT. Lunch & Learn webinar series was Help Wanted! The I/DD Workforce Crisis. This was part one of a two-part series. Be sure to attend next month’s webinar for Part 2 which will discuss ways to take action to help end this crisis.

Webinar Resources

About the presenter

Photo of Pat Porter

Patricia Porter, PhD is the former Clinical Director of the UNC Division for Disorders of Development and Learning (now the CIDD). She served as the Chief of Developmental Disability Services for NC during which time she directed all programs for adults and children with developmental disabilities except those managed by the Department of Public Instruction. During her tenure NC experienced the greatest growth in community supports and services in the history of the state, far exceeding the national average. She established the NC Self Advocacy Association and the Developmental Disabilities Consortium.

Dr. Porter served as a Research Professor in the UNC Chapel Hill School of Medicine teaching graduate classes and advising master’s and doctoral students in their thesis and dissertation research and Associate Director of the Center for Literacy and Disability Studies. As Senior Policy Advisor to the NC General Assembly, Dr. Porter provided expert support in areas of health policy to include Medicaid, managed care and developmental disabilities. Currently she serves as a member of the Affiliated Faculty for the UNC Center for Literacy and Disability Studies and Advisor for the Innovations DSP Work Group.

Dr. Porter has served as an expert witness to the U.S. Congress on the topic of Early Intervention and has engaged in collaborative disability research with universities across the country. She is the recipient of many awards to include the i2i Lifetime Achievement Award, the ARC President’s Award and the NC Council on Developmental Disabilities’ Helen “Holly Riddle Award for Distinguished Service. She has spent her entire professional career in partnership with and support of individuals with developmental disability.

Register for the October Lunch & Learn Webinar!

Join us on the third Tuesday of every month at noon with new topics brought to you by thought leaders in the I/DD community.

Hear. Share. Act. October 17, 2023 webinar announcement. Topic is Help Wanted! The I/DD Workforce Crisis Part 2Throughout our series, Meet The Need NC intends to create a basic understanding of the unmet needs of those living with I/DD in North Carolina. Register for one or all of our Lunch & Learns: HEAR. SHARE. ACT: A Lunch & Learn Disability Advocacy Series.

Our next Lunch & Learn will be on October 17 from 12pm – 1pm. The topic is about the Help Wanted! The I/DD Workforce Crisis – Part 2.

Register today!


LENS: Lived Experience Network Speaks

LENS, which stands for Lived Experience Network Speaks, is a blog provided by Meet The Need NC from our LENS Advisory Group. LENS includes individuals with intellectual and/or developmental disabilities (I/DD) experience, including people with I/DD, families, and caregivers with separate groups for those who speak English or Spanish. We provide a space for them to share freely, but these opinions do not necessarily represent those of Meet The Need NC or all members of the LENS Advisory Group.

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The time is long overdue to take action on the DSP crisis!

This month’s guest blogger is Cheryl Powell. 

Photo of Cheryl Powell, a woman with dark hair and wearing a tan dress.

DSP. What does DSP mean? DSP stands for direct support professional. However, the word direct support professional can also be used interchangeably with titles such as direct care worker, attendant, and companion. With so many names, is it any wonder that people are so confused about what a direct support professional is? Let alone what they do? 

As a DSP myself, I personally do many tasks that fit into many different job descriptions. For instance, sometimes I act as a nurse by giving meds, as a psychologist by giving a client emotional support and coping skills, and as a Certified Nursing Assistant (CNA) by giving my client personal care as needed. 

By doing all these things is it any wonder that I feel disrespected when I’m told I’m “just” a DSP? To be honest, I do more on any given day than any of these professions mentioned above combined. I am supposed to be the client’s mom, dad, nurse, psychiatrist, caretaker, med administrator, friend, and support person when they need it. And for all this work myself and many of my fellow co-workers are only offered a measly, and downright insulting $10 to $16 an hour. 

Now if I sound frustrated it’s because I am. I along with my fellow co-workers in this field deserve no less than $25 an hour and that’s putting it nicely. The mere fact that we are giving an insulting amount of money to live on shows just how much respect is given to people with disabilities. 

You see if the people in power (and when I say “people in power” I mean the state of North Carolina general assembly, the providers of North Carolina, the LME-MCOs of North Carolina and Center for Medicare & Medicaid or CMS) would do their jobs and pay us correctly, they would show that they value people with disabilities as people and not just a drain on their precious economic system. 

By working as a direct support professional, and I want to highlight the word “professional” here, I deserve to be paid appropriately and so do all my other co-workers in the state of North Carolina. We are a profession; we are not people who simply got a job out of high school or college. We are not summer workers, we are not winter workers, we are 365 days-a-year 24/7 days-a-week workers, and we deserve to be paid as such. 

I and my fellow DSPs across the state of North Carolina are fed up and sick of being treated as if we are just another worker, especially when right now we could go to McDonald’s and make more money flipping burgers then we make working with a person with a disability who needs the care to survive in their everyday lives. 

Now I ask you why doesn’t North Carolina care about people with disabilities? What is their problem? I’ll tell you what I believe their problem is – they do not see people with disabilities as a value to our society and that is their issue to sleep with at night. It’s not ours as DSPs and it’s certainly not the people with disabilities’ issue to deal with as best as they can manage it. It’s time for those in power in the state of North Carolina to wake up and actually do their well-paid, powerful jobs. People with disabilities, no matter what level of disability they possess, have value. These are people you’re talking about for heaven’s sake! People who give love and get love, people who deserve the right to work, who deserve the right to get married without being penalized for it thanks to federal Medicaid eligibility laws. These are people who contribute to society every single day, the same way that people who do other jobs do. 

We have every right to live our lives the way we see fit. Not the way mom and dad see fit (if we maintain our own guardianship rights), not the way the state sees fit, not the way that our society sees fit! No, we are individuals who have disabilities, and we have the right to make decisions for our own lives! 

It is beyond time that the state of North Carolina and all the people in power that encompasses the system for people with disabilities realize that. You see, now is the time for people with disabilities to take the power back for ourselves and you know the way we do that, folks? We do that by voting! I’ll tell you a little secret that people in North Carolina don’t seem to understand…people with disabilities have the right to vote and we will use it. 

Let me tell you something else. The current direct support workforce crisis could have been avoided years and years ago! The reason it hasn’t been stopped is because of the love of the almighty dollar. North Carolina has known that this crisis was coming for at least 30 years now and chose not to address it. Then along comes COVID-19. Now there’s no excuse for NC to not fix the problem they allowed to linger for some 30 years. 

So now I guess the question would be, “Cheryl, what do we do to change it?” Well, I’ve been told to talk to legislators, to talk to leaders, to talk to everybody I can, and I have multiple times. Now guess just how far I have gotten. Well, you tell me. Does your loved one with a disability have a care worker all week when they need it? I doubt it unless that person is a relative such as a person’s mom or dad or brother or sister but it’s not somebody that gets paid to be there most of the time, is it? So, you tell me. What do we do to fix this? Quite frankly, I’ve tried for over eight years to get through to those in power. 

One thing I forgot to mention is I am an individual with a disability. I personally have a physical disability known as cerebral palsy. I use a wheelchair every day and every night and I work as a DSP. That’s right I (the girl in the wheelchair) have something called a job. However, it is not because I got any help from the State by any means. No, I went and got that job on my own. Not thanks to any program given out by the State. Now, my job comes with its own set of challenges. I get passed over for promotion after promotion after promotion. Why is that you ask? I can’t drive. I had someone literally tell me this week, “Cheryl, you’re qualified for this high-paying position on paper but because you can’t drive, we can’t hire you.” So, despite my best efforts, even I, with my college education and my lived experience meaning that I actually have a disability, not just sympathy for people who do. 

I continue to get turned down for position after position. I routinely get turned down for positions that I would be best at because I have a disability. Now you can disguise discrimination as, “Oh, it’s because you can’t drive.” I’m too smart and I can see right through that. Let me tell you, I am well over-qualified than many Qualified Professionals working in the field and making a salary today. 

At least I actually know what it’s like to have a disability. Honestly the whole situation disgusts me. The bottom line is that the Direct Professional Workforce crisis can be solved. People with disabilities and their allies will be the people to solve it. We are the ones who actually care about the people who need support. Remember in the end there’s no one better to bet on than yourself.

About the author: Cheryl Powell was born and raised in Wilmington, NC, and graduated from UNC-Wilmington with a degree in social work in 2003. She worked as a Direct Support Professional for seven years for Easter Seals UCP. In 2015, she became a member of the North Carolina Council on Developmental Disabilities (NCCDD), and recently completed her eight-year term. She also served as chairperson of the NC Empowerment Network, a statewide self-advocacy group. She is a member of the following organizations: NACDD, DSP Workgroup, Work Together NC, LAND/Registry Advisory Council, Technical Advisory Group (TAG). Cheryl states that she wants to do everything that she can to support and advocate for others with disabilities. She has been married to her best friend Billy since 2012 and has a chihuahua named Annabelle who she adores.

Healthcare Jobs Projected to Grow the Fastest by 2032

Graph from the Bureau of Labor Statistics listing the top 10 occupations groups projected to grow the fastest.

Source: Bureau of Labor Statistics (September 8, 2023)

The Bureau of Labor Statistics (BLS) released its 2022-2032 employment projections data on September 6, 2023, showing that the economy is projected to add almost 4.7 million jobs from 2022 to 2032.

One of their charts showed that one of the fastest growing occupational groups, healthcare support, topped the chart.

According to the BLS, “Healthcare growth is being driven by an aging population and a higher prevalence of chronic conditions. Combined with the healthcare practitioners and technical occupational group, healthcare occupations are projected to account for approximately 2 out of every 5 new jobs added to the economy from 2022 to 2032. Demand for information technology products and services are fueling the increase in the computer and mathematical occupational group. Community and social service occupations – including counselors, social workers, and religious workers – are often adjacent to healthcare, so some of this group’s growth will be associated with the robust growth that is expected among healthcare occupations.”

Read more from the BLS blog

Did you know? Information you can use!

Facts about the Direct Support Professionals Crisis

Graphic of yellow question marks with a blue background and the words did you know?

  • Direct Support Professionals (DSPs) are essential for many with I/DD to live the community instead of an institution.
  • There is no standardized training for DSPs in NC; Most training is done in home by family members.
  • There is a significant increase in the number of family members serving as paid DSPs.
  • The DSP shortage is a problem states across the country are trying to solve.
  • Data shows that low wages and lack of credentialing are barriers to growing a DSP workforce.

Resources on More Topics

An Update from the NC Medicaid Ombudsman: Slides from their presentation held on September 20, 2023, that covered NC Medicaid Managed care basics and understanding your Medicaid plan.

Inclusion Works: NCDHHS recently launched its Inclusion Works initiative to promote Competitive Integrated Employment (CIE) for Individuals with Intellectual or Developmental Disabilities (I/DD). Read the press release to learn more, including how to sign up for their newsletter and register for their monthly Lunch & Learn webinar series.

Reports to Joint Legislative Oversight Committee on Medicaid and NC Health Choice and the Fiscal Research Division filed in June:

Visit our Statewide Resources web page for more resources!

Upcoming Events

Voters Rights with Disability Rights NC Kenya Myers October 11, 2023

Disability Rights NC (DRNC), our state’s Protection and Advocacy organization for people with disabilities, works to support voters with disabilities in understanding and exercising their right to vote. Voters with disabilities are the most disenfranchised groups of citizens who are eligible to vote. Hear how DRNC combats this disparity and educates us on the best ways to get out and vote. This event is offered by the Carolina Institute on Developmental Disabilities. Click here for more information and to register

Delivering on Integration: Optimizing Connections December 6 – 8, 2023

This is the 2023 Winter Conference held by the i2i Center for Integrated Health. The Pre-Conference Day is on December 6, followed by the Conference on December 7 & 8. This is an in-person event held at the Benton Convention Center, Winston Salem, NC. The conference focuses on preparing for integrated care under the Medicaid Behavioral Health/IDD Tailored Plan. This dramatic shift in caring for the whole person needs of individuals with behavioral health and I/DD needs involves innovative processes and protocols that build new partnerships with healthcare, pharmacy, social services, education, housing and more. Click here for more information and to register

Inclusive House Summit: A Roadmap to Inclusion November 13, 2023

This is the second annual Inclusive House Summit held by Hope Community Imagined. This in-person event will be held at the NCSU McKimmon Conference Center at 1101 Gorman Street in, Raleigh NC. Participants will learn about the disability housing movement and how it led to where we are today, when individuals with disabilities have the right and choice to live in inclusive housing and to participate as full members of their communities. Click here for more information and to register

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