The first week of February was a difficult week. We heard about the passing of two amazing self-advocates with developmental disabilities who served on the North Carolina Council on Developmental Disabilities.
Ronnie Marshall and Karen Stallings both passed away in early February. They were the best kind of self-advocates.
Ronnie called himself Superman. And he was a super man. He joined the Council with vigor and enthusiasm. He would reach out to me throughout the meetings telling me what he appreciated, what confused him, and what he could do to move the Council forward. He was eager for me to meet his minister, to join him for lunch, and to talk whenever there was time. He was a joyful friend who rose above many of the struggles of his daily life.
Karen and Ronnie were advocates. And we have a lot to do to carry on their advocacy.
I also spoke to another self-advocate who is slowly losing her independence because of the Direct Support Professional (DSP) crisis.
There are a lot of people struggling right now because there is such a desperate shortage of DSPs and a waiting list of over 15,000 people. At the same time, we made unprecedented progress in these areas in the last few months. This included DSP rate increases, 1,000 new waivers, a new commitment from DHHS to Competitive Integrated Employment, and the upcoming implementation of 1915i (Medicaid services to individuals with I/DD who have Medicaid).
This is a time of sadness, but also a time of celebration. It is a time of great frustration but also a time of hopeful change. It is a time of solitude and loneliness in a pandemic, but also a time we must find ways to care for one another.
I only got to know Karen and her husband Kenny through Zoom. Still, I felt like I knew them because it was so obvious that they were a couple who cared deeply about each other. They spoke up and spoke out in ways that connected to all who heard them. They were two of the first self-advocates to speak out at a state level in North Carolina and a critical part of our Self-Advocacy Discussion Series.
Let’s celebrate the lives of Karen and Ronnie and carry on their advocacy!
Talley Wells, Executive Director
Much of our attention during the legislative session was focused on the budget which included, among other items, 1,000 Innovations waiver slots and funding to increase wages for direct support professionals (DSP).
The state is working with the LME/MCOs to distribute the 1,000 Innovations slots. We expect that 400 will be given out in March, and the remaining 600 to be given out in July. While this is a small step in addressing the over 15,000 people waiting for services, it is a start.
The state is also working with service providers to distribute the money that was given to increase salaries for DSPs.To receive funds for DSPs they employ, providers must be Medicaid- and/or NC Health Choice-enrolled and recognized by NC Medicaid as a Home and Community Based Service provider. All funds for the wage increase will be given through rate increases to providers who provide HCBS services. All providers who are eligible to participate in the HCBS wage increase are strongly encouraged to distribute no less than 80% of funds received to increase wages of direct care workers identified. There is some concern about the recent changes to the language of 80% being strongly encouraged rather than mandated. The effective date of new rates for workers is expected to be March 1, 2022, instead of Feb. 1, 2022.
We are grateful that this budget begins to address the gaps in the system and the needs of people with developmental disabilities. We need to continue to educate policy makers about the waiting list and the direct support professional crisis.
While the budget does not include expansion, it does create the Joint Legislative Committee on Access to Healthcare and Medicaid Expansion Non Standing Committee - North Carolina General Assembly (ncleg.gov). The committee is made up of nine members appointed by Speaker of the House Tim Moore (R-Cleveland) and nine members appointed by Senate President Pro Tempore Phil Berger (R-Rockingham).
The nine House members appointed to the committee are Rep. Kristin Baker (R-Cabarrus), Rep. Wayne Sasser (R-Stanly), Rep. Donna McDowell White (R-Johnston), Rep. Keith Kidwell (R-Beaufort), Rep. William Richardson (D-Cumberland), Rep. Brian Farkas (D-Pitt) and Rep. Charles Graham (D-Robeson). Rep. Donny Lambeth (R-Forsyth) was appointed co-chair and Rep. Larry Potts (R-Davidson) was appointed vice chair.
On the Senate side, the nine members appointed to the committee are Sen. Ralph Hise (R-Mitchell), Sen. Danny Britt (R-Robeson), Sen. Lisa Stone Barnes (R-Nash), Sen. Kevin Corbin (R-Macon), Sen. Michael Lee (R-New Hanover), Sen. Dan Blue (D-Wake), Sen. Kirk deViere (D-Cumberland) and Sen. Mike Woodard (D-Durham). Sen. Joyce Krawiec (R-Forsyth) was appointed co-chair.
The committee will study various ways to improve access to healthcare and health insurance for North Carolinians, including, but not limited to, Medicaid expansion. The committee will meet this year during the interim and will be allowed to propose legislation. This committee has meetings scheduled on February 18, March 1, and March 15.
The Joint Legislative Oversight Committee on Health and Human Services is also meeting and their next scheduled meeting is on Feb 15.
1915(i) Home and Community Based Services
North Carolina is currently developing new service definitions under 1915(i) Medicaid waiver. These services would create more options for people with developmental disabilities who are Medicaid eligible. The state’s goal for these services is that they will 1) take the place of the current B(3) services and 2) improve the service array for people with developmental disabilities. Key information about 1915(i) services:
The services that will be included under the (i) waiver include:
The 1915(i) option will increase opportunities for home and community based services.
Increasing Employment for People with I/DD
On Jan 20th the North Carolina Department of Health and Human Services announced the launch of the program Promoting and Expanding Competitive Integrated Employment for Individuals with Intellectual and Developmental Disabilities Strategic Plan. This plan is being launched as part of a formal agreement with the Disability Rights of NC and Center for Public Representation.
The plan will help individuals with intellectual and other developmental disabilities to gain access to competitive integrated employment, which means jobs in the community with a salary above minimum wage and with access to the same benefits as their co-workers. The agreement promises to help over 1,000 disabled NC workers who currently work in segregated settings, often referred to as sheltered workshops or Adult Developmental Vocational Programs (ADVP). In these settings, workers with disabilities are paid below minimum age and often separated from non-disabled workers. This new plan will give people with disabilities support to leave the sheltered workshop and find jobs in the community.
No one will lose their current services. People will receive additional supports and services over the next five years to obtain jobs in the community that pay at least minimum wage.
By July 1, 2022, no new people will enter into ADVPs, and the plan is to end funding for ADVPs by June 30, 2026.
There is much work to be done over the next several years to make employment, and other integrated community opportunities, available to people with intellectual and developmental disabilities. We celebrate and will continue to track this new state plan as it aligns with NCCDD’s five year plan.
You can read more about this agreement at the DHHS website. You can also read about it at the Disability Rights North Carolina website. Disability Rights North Carolina and the Center for Public Representation are the two disability advocacy organizations that entered the agreement with DHHS.
Build Back Better Agenda, the federal bill that we have covered over the past several months came to a standstill. This bill had the potential to positively affect the lives of people with disabilities and their families. This bill contained funding for Home and Community-Based Services including:
While the original large bill could not get passed in the Senate, Democrats are working on a smaller version of the bill. Since the disagreements that kept the bill from passing were not about the disability items, there is still some hope that a smaller bill that would include education and healthcare items can be passed. Continuing to educate representatives about how important home and community based services are for people with disabilities is critical.
The federal budget has not yet been passed. Congressional leaders released a short-term spending plan on Feb 7 . The House and Senate are expected to pass the continuing resolution before the next deadline of Feb 18. This will move the next shutdown deadline to March 11. This allows the federal government to continue to operate even though there is no budget in place.
Bill Introduced to End Waiting Periods Which Deny People with Disabilities Access to Healthcare
On February 3, U.S. Representative Lloyd Doggett (D-TX), Brian Fitzpatrick (R-PA) and Senator Bob Casey (D-PA) introduced the Stop the Wait Act to end harmful waiting periods during which people with disabilities must wait five months to receive Social Security Disability Insurance cash benefits and an additional two years to receive Medicare benefits. This wait places people with disabilities at serious risk of not being able to access health care and facing financial instability. This legislation would ensure that people with disabilities can immediately access the benefits they earned without an unnecessary additional wait. The Arc supports this legislation.
Other Federal News
U.S. Secretary of Education Miguel Cardona is pushing for more funding to meet the needs of students with disabilities and to support special education teachers. In a major speech late last week, Cardona said that it’s not enough for students to be back in school after classrooms across the country went virtual in response to the COVID-19 pandemic. The nation needs to do more to ensure that children, including those with disabilities, are successful, he said.
Cardona specifically highlighted special education as an area that needs attention.“It means increasing funding for the Individuals with Disabilities Education Act so that every eligible child with a disability can access a free, appropriate public education,” Cardona said. “It means not allowing for a culture of low standards or low expectations for some students and families over others.”
The education secretary also indicated that he wants to see “funding and pushing for additional special education teachers, and investing in educators and paraprofessionals — in their well-being, and in recruiting and retaining them.”
Democrats in Congress have put forward bills that would significantly increase federal special education spending, but the legislation is currently stalled.
The North Carolina Council on Developmental Disabilities is mourning the loss of current and former members. It was an honor to have had these individuals serve the Council with their talents and time.
Council member Ronnie Marshall passed away on Feb. 2. Marshall was in the second year of his Council term and also served on the Financial Asset Development Committee. He was on the board of Arts Access, was a member of the Raleigh Mayor’s Committee for People with Disabilities as well as the NC Empowerment Network and was the chaplain for both the North Raleigh and Capital City Civitan Clubs.
Karen Stallings, the past Executive Director of the Association of Self Advocates of NC, died on Feb. 2. She was an actress & a board member for an inclusive theater company, Raleigh Ensemble Players and was writing her autobiography, "I'm not Disabled, I'm just a little Inconvenience", as well as a play "Soldiers of Empowerment". Karen and her husband, Kenny, hosted and produced an award winning TV program called "Speak Up, Speak Out, Voices in the Community" on which they interviewed guests to talk about different disability issues. She and Kenny participated in a local Bocce Ball league for persons with disabilities. She was active on the Council from 1996-2000.
Last December, former Council member and previous Junior Ms. Wheelchair North Carolina, Monica Jackson Foster passed away. She was a member of the Council from 2001-2004, serving on the Executive Committee, the Community Capacity Building Committee and was the Council Vice Chair. In addition, she worked with other Council members to create an accurate assessment of the state of self-advocacy in North Carolina. Foster worked as a journalist, life coach, and a disability advocate and motivational speaker through her business, Butterflywheel Motivation Advocacy and Consulting LLC.
North Carolina Governor Roy Cooper appointed Candler resident, Dr. Rebecca Putnam, to the North Carolina Council on Developmental Disabilities (NCCDD).
Dr. Putnam will join the 39 other individuals on the Council who work to identify problems facing the intellectual and other developmental disabilities (I/DD) community throughout the state.
Dr. Putnam is a family physician at MAHEC (Mountain Area Health Education Center) Family Medicine Residency in Asheville where she is responsible for teaching resident physicians and seeing patients of all ages in the clinic. She also serves as the director for the Adult I/DD Consult Clinic and is the Medical Director of the Acute Care Clinic, where they test and treat for COVID.
Having a brother with Autism, Dr. Putnam has been involved in his care most of his life. “I have seen first-hand how the struggle to get needed services impacts those with disabilities and their families. During my medical training and career, I have been disappointed in the lack of curricula and experience taking care of those with disabilities. This leads to medical providers who are completely unprepared to take care of this unique population and contributes to health disparities. Through my work at MAHEC I am hoping to improve this training of medical learners at all stages,” Dr. Putnam explained.
Dr. Putnam holds a Bachelor of Science in Human Development and Family Sciences from The University of Texas at Austin and her medical degree from The University of Colorado. She points to the Council’s outreach to the LatinX population in North Carolina as one of the most important things they are doing.
NCCDD has moved its office and also has new phone numbers. Please make note.
3109 Poplarwood Court, Suite 105
Raleigh, NC, 27604
2010 Mail Service Center
Raleigh, NC 27699
(NEW) Office/TTY: (984) 920-8200
(NEW) Fax: (984) 920-8201
Toll Free: (800) 357-6916