We each have a story to tell. A good story has difficulty and struggle. It has challenges and obstacles that must be overcome.
A story would be boring if it didn’t have challenges and obstacles. Would you want to read a story about someone who goes out into the world and nothing interesting happens?
For good and bad, everyone in the intellectual and developmental disability (I/DD) community has a full and powerful story. There are many challenges and obstacles right now.
We need to share our stories because they can make an impact. I traveled to Washington, DC with four self-advocates: Bryan Dooley, Cheryl Powell, Caroline Dempsey, and Kenneth Kelty. We met with the staff of North Carolina Senators and Representatives.
Bryan, Cheryl, Caroline and Kenneth told their stories. Their stories were filled with passion about who they are, the obstacles they confront, and what the larger disability community in North Carolina is facing. Bryan talked about the difficulty of losing his Mom and having only one reliable Direct Support Professional (DSP) to provide the daily supports he needs to live and work in the community.
I watched the Washington leaders as their eyes were opened by the stories they heard. The stories helped these leaders who craft national policies understand the people impacted by decisions about funding, Medicaid, housing, and employment.
There were also powerful stories told at our most recent Self-Advocate Discussion Series. The discussion focused on the DSP crisis. I wished we could have had every state leader in North Carolina there to hear the stories of our friends who cannot find DSPs. The scales would have fallen from their eyes.
The good news is that we captured those stories. We will continue to find ways to tell those stories through webinars, meetings, film, music, and more. NCCDD and our partners will provide platforms to blast these important stories throughout our state.
Talley Wells, Executive Director
The NC General Assembly ended a very long legislative session in March after 199 legislative days, making it the first time in state history that a regular session was adjourned in a different year than it was convened. The short session is set to begin on May 18. During the short session, the House and Senate budget writers will propose adjustments to the two-year budget that was passed in the long session. One of the topics we expect to see in the short session is the expansion of Medicaid. Bill filing deadlines are set before the short session begins, which indicates that the General Assembly is looking to get in and out of session quickly.
Joint Legislative Committee on Access to Healthcare and Medicaid Expansion continues to meet. This committee has been gathering information on areas such as health professional shortages in North Carolina, the loss of rural hospitals, and the number of uninsured people in North Carolina. The most recent meeting included a presentation on the impact of Medicaid expansion in two states. Medicaid Expansion would increase access to medical and psychiatric services for many people in North Carolina including people with mental health needs and substance use disorder. This would potentially free up state dollars that could benefit people with intellectual and other developmental disabilities (I/DD). The next meeting of this committee is on April 26 at 9:30 a.m. The committee is expected to submit a final report along with recommendations to the Legislature by the start of the Short Session.
More information about the past meetings and presentations can be found here:
Technical Corrections Bill HB243 was signed by the Governor on March 17. This bill makes needed corrections to budget items. The state budget that passed in December 2021 included funding towards increasing Medicaid home and community-based provider rates so that wages paid to direct support professionals/direct support workers (DSP) can be increased. The technical corrections bill clarified that the direct support professionals/direct support workers who are hired by employers of record or under consumer-directed or self-directed options are included in the wage increases. This was a needed clarification to expand the wage increases to these DSPs.
We are still evaluating the impact of the funding for wage increases. While the budget special provision language states that $15.00 per hour is the goal, there is not enough money appropriated in the budget to reach $15.00. During the legislative session, HB 914 Support Our Direct Care Workforce was introduced. This bill would have allocated $160 million in state funds to draw down an additional $334 million in Federal matching funds to move DSPs to a minimum of $15 dollars an hour. This bill did not pass. Instead, the General Assembly included $68 million recurring in state funds for rate increases in the budget, not the $160 million that H914 said was needed. This $68 million will draw down another $141 million in Federal funds with North Carolina’s enhanced Federal match: a significant step in the right direction but less than what is needed.
In addition, there are some temporary rate increases that were part of the COVID response that will expire this year. This further complicates the impact of the funding for wage increases. We greatly appreciate the funding that has been allocated to address wages for DSPs, and will continue to educate about the needs of the DSP workforce.
Olmstead Plan– As discussed in previous Highlights & Hot Topics, the North Carolina Department of Health and Human Services (NCDHHS) published its Olmstead Plan earlier this year after receiving substantial feedback to the initial draft. The plan is designed to assist people with disabilities who receive or are eligible for publicly-funded services to reside in and experience the full benefit of being part of day-to-day life in communities alongside those without disabilities. The plan’s goal is to divert people from entering institutions and to support those wishing to leave. There continue to be concerns about the lack of detail in the plan. As a follow-up to the release, a new set of subcommittees has been established. A meeting of Olmstead Plan Stakeholder Advisory (OPSA) occurred on March 29. It is not completely clear as to the role of OPSA and the subcommittees, but we are hopeful that it indicates a willingness to continue to amend and improve the plan.
In March President Biden signed an omnibus spending bill funding all of the federal government’s discretionary programs through the end of the fiscal year (September). The bill included a few notable increases: Lifespan Respite Care Act (14%), Special Olympics Education Program (30%), Parent Information Centers (10%), and Social Security Administrative Budget (10%). But advocates say it is not enough. The final legislation left out many of the increases that had been included in a version approved by the U.S. House of Representatives. The smaller increases in this final bill and the stalled Build Back Better Act means that there continues to be significant unmet needs for people with disabilities. We should continue to educate about the need for expansion of home and community-based services.
There is proposed Federal Legislation related to the Direct Support Professional workforce issues. One is Recognizing the Role of DSPs Act which is Senate Bill S.1437/House Bill HR.4779. Another is Supporting our Direct Care Workforce and Family Caregivers Act (S.2344) which has a companion bill in the House called Direct Creation, Advancement, and Retention of Employment (CARE) Opportunity ct of 2021 (HR 2999). The needs of this critical workforce is being recognized not only at our state level but also at the federal level.
The U.S. Department of Transportation recently proposed a rule requiring that all new single-aisle aircraft with 125 or more seats have at least one accessible lavatory. The restroom would need to be large enough to allow a passenger with a disability to “approach, enter, and maneuver” and use all of the facilities — with the help of an assistant, if needed — and leave using the onboard wheelchair. This will obviously take several years to accomplish but is a step in the right direction.
All month long you’ve been sending the North Carolina Council on Developmental Disabilities members your questions through the “Ask Me Anything” link and they were amazing and thought-provoking ones! Starting April 25, you will get your answers directly from our Council!
Check NCCDD’s social media accounts (Facebook, Twitter, YouTube) to watch the video of our members sharing their answers and information with you. Tune in on April 25 to watch the Council answer all the great questions you’ve been submitting all month long!
The 2022 Disability Policy Seminar was a three-day federal legislative conference held at the end of March. Members from the North Carolina Council on Developmental Disabilities (NCCDD) attending and advocating to legislators included NCCDD Executive Director Talley Wells; NCCDD chair Bryan Dooley with Direct Support Professional Dave Owen; Council member Cheryl Powell, and NCCDD staff member Pam Hunter Dempsey along with spouses and other advocates.
People nationwide attend this seminar in Washington, DC for policy updates, training, and to visit with their congressional members. New this year was a rally to support home and community-based services. “To me, that was the most inspiring part of the conference, and the NC delegation was in the front row,” said Dooley.
Dooley added, “This type of advocacy (with legislators) takes a long time because you have to build relationships. So it might not seem that we accomplished a lot, because there was no breakthrough legislation, but we had a positive meeting, which is an important step.”
The Ability Leadership Project of North Carolina (ALP-NC) focuses on leadership development education for self-advocates, parents, professionals and other stakeholders. This NCCDD-funded initiative, in partnership with Disability Rights North Carolina and the Center for Creative Leadership (CCL), is providing leadership training to individuals with intellectual and other developmental disabilities (I/DD) with a goal to increase individual, family, public and system knowledge and engagement to provide systems advocacy for the financial security and community living opportunities. For more information, go here.
Peer Mentor Training for People with I/DD, coordinated by Community Bridges – Consulting Group, is a joint venture of Optum and the National Association of Councils on Developmental Disabilities (NACDD) and NCCDD. The initiative’s focus is to demonstrate that peer mentors with I/DD can positively impact the lives of other individuals with I/DD and their families. By sharing their own lived experience and practical guidance, peer mentors help people develop their own goals, create strategies for self-empowerment and take concrete steps towards building fulfilling lives for themselves. To find out more details, please click here.
North Carolina Council on Developmental Disabilities’ (NCCDD) Self-Advocate Discussion Series aims to emphasize the value of people with disabilities to build and maintain relationships with North Carolina legislators and decision-makers while bridging relationships and a network among North Carolina self-advocates.
The next virtual, monthly discussion will be May 4 starting at 1:00 p.m. This session is for sharing and developing goal and topic-oriented personal stories, NC Self-Advocate Network relationship building, NCCDD Awareness, and just being with others who have common interests.
Expect fun, learning and making new friends while sharing and hearing personal stories of lived experience about topics important to intellectual and other developmental disabilities (I/DD) advocacy. To register to attend, please go here.