January 2022 Highlights and Hot Topics
Letter from the Executive Director
I will use more “plain language.” That is my New Year’s Resolution. This resolution is inspired by the Council’s newest Systems Change Manager. Pam Hunter Dempsey wants us to use more plain language.
What is plain language? Plain language is writing that is clear and easy to read. It is also a law. Congress passed an Act to require government documents to be easy to understand.
Why should we use more plain language? It makes important information available to more people. It is particularly important to the disability community. It helps us include more people.
I am a lawyer. Lawyers often communicate about complex laws and regulations. Lawyers are taught to write in ways that are easy to understand. Many people don’t believe this. I think it is because communicating in plain language is hard to do.
The Maryland Developmental Disabilities Council has worked hard to use plain language. It uses plain language on its website and annual report. It also has plain language documents about COVID-19 and vaccine shots. You can share these documents. (Speaking of the vaccine, GET THE BOOSTER! It could save your life or keep you from getting sick.)
I love the plain language materials from Green Mountain Self-Advocates. They have a lot of great resources. They have a booklet on COVID-19. It has a lot of pictures and headings.
A great website to learn how to use plain language is plainlanguage.gov. It has a lot of tips for writing in plain language. I go to this website a lot. I need the tips because it is difficult for me to write in plain language. I’ll keep working on it. That is my New Year’s Resolution.
Talley Wells, Executive Director
Public Policy (as for January 12, 2022)
STATE UPDATE
Budget Follow-up
Last month we reported on the final state budget which included more items related to people with intellectual and other developmental disabilities (I/DD) than other budgets in recent history. Funding of an additional 1,000 Innovations Waiver slots and recurring funding to increase direct support professionals (DSP) wages are two of the highlights that directly relate to the priorities of the NCCDD. The Division of Health Benefits (DHB) is working to distribute the Innovations slots to the Local Management Entities/Managed Care Organizations (LME/MCOs). The legislation called for 400 slots to be implemented in March and the remaining 600 slots to be implemented in July. The state is also gathering information from providers to determine the number of DSPs across the state who are eligible for the wage increase.
The budget that was passed also included requirements for the Department of Health and Human Services to provide reports to the legislature. One of these reports is due on March 1:
Plan For Adequate Provider Supply for Services Provided Through the Innovations Waiver
Requires NC DHHS to plan for additional Innovations Waiver slots that could be added in the future. “No later than March 1, 2022, DHB shall submit a report to the Joint Legislative Oversight Committee on Medicaid and NC Health Choice that outlines the plans for adding a minimum of 1,000 waiver slots in the 2023-2025 fiscal biennium and that contains recommendations for ensuring that there would be adequate health care providers to support the needs of the additional individuals served under the waiver should the number of slots be increased in the future.”
The request for this report indicates that the intent of the legislature is to fund additional Innovations slots in the future; but they also want to ensure that there will be providers and DSPs to provide the waiver services and supports.
Managed Care Transformation Update
Tailored Plan implementation, which was scheduled for July 2022, has been delayed until December 2022. The delay in the state budget, along with the on-going work on Care Management and the 1915(i) benefit, played into the decision for the needed delay. Both Care management and 1915(i) supports need to be ready at the same time as the Tailored Care launch. The NCCDD is actively involved in providing input into the development of these important aspects of the system. It is a priority that family navigation and peer support be included in these definitions. There is representation on the Tailored Care Management Technical Assistance Group (TAG), as well as participation with the Developmental Disabilities Consortium to develop a position paper on this priority.
Olmstead Plan
The Department of Health and Human Services (DHHS) released the first draft of the Olmstead Plan in the fall and received a great deal of feedback from the community. The updated plan was made public on January 12. The expectation was that the plan will address four main areas: 1) competitive/integrated employment, 2) direct support professionals, 3) Psychiatric Residential Therapeutic Facilities (PRTFs), 4) transition to community. The revised plan will be reviewed for more requirements for data, as well as meaningful measures of success in addressing the institutional bias in our service system. The NCCDD will provide an update and summary of the revised plan.
FEDERAL
Budget
Build Back Better Agenda, the federal bill that could greatly affect the lives of people with disabilities and their families, has come to a standstill after agreement on some of the items could not be reached. This bill contained funding for Home and Community-Based Services including:
- $150 billion over 10 years for home and community-based services (HCBS) to eliminate waiting lists for services and bolster pay for direct care workers.
- Making the Money Follows the Person program permanent to help people with disabilities who want to leave congregate care and transition to live in their own home and community with supportive services.
It is disappointing that this legislation, which has the potential to increase community opportunities for people with disabilities and address waiting lists, has stalled. However, it is important to note that the disagreements about the bill were not about the disability-related items. Education and advocacy continue in the hope that some of the disability-related funding could be included in the 2022 spending bill or passed through some other means.
House and Senate Appropriations panels failed to reach agreement on the dozen annual spending bills that fund federal agencies for the 2022 fiscal year. Congress passed one continuing resolution in September to extend the time to work on the budget until Dec 3. Then on Dec 2, Congress approved a short-term spending bill that will keep federal agencies running through Feb. 18, 2022. So, work continues on the full 2022 federal budget.
Social Security Benefits
Millions of Americans with disabilities are seeing a big bump in their Supplemental Security Income and other Social Security benefits. Monthly payments are growing 5.9%, according to the Social Security Administration. The change applies to SSI payments beginning Dec. 30 and Social Security benefits paid this month. The increase is due to an annual automatic cost-of-living adjustment, or COLA. This year’s COLA is the largest it’s been since 1982. For individuals receiving SSI, the maximum federal benefit for 2022 will rise to $841 per month. The figure is $1,261 for couples. Actual payments could be higher since some states contribute more.
The Social Security Administration said it mailed notices in December to beneficiaries detailing new payment amounts. Most people can also access the information online through their Social Security account, the agency said.
ABLE Accounts
For the first time in four years, the amount of money that people with disabilities can save without jeopardizing eligibility for government benefits is rising. Starting this month, the Internal Revenue Service said that the federal gift tax exclusion is growing from $15,000 to $16,000 annually. That same cap also applies to contributions to ABLE accounts, a special savings vehicle for people with disabilities.
ABLE accounts, which were created under a 2014 law, allow individuals with disabilities to save up to $100,000 without risking eligibility for Social Security and other government benefits. Medicaid can be retained no matter how much is in the accounts. Interest earned on funds in ABLE accounts is tax-free, and money saved can be used to pay for qualified disability expenses including education, health care, transportation and housing.
Annual deposits in ABLE accounts are generally limited to the value of the IRS’ gift tax exclusion, now $16,000. However, people with disabilities who are employed can also save some of their earnings in the accounts above and beyond the gift tax amount. For those in the continental U.S., that means up to an additional $12,880 this year, according to the ABLE National Resource Center.
Welcome to the New Chair of the Council
On December 9, 2021, Governor Roy Cooper announced Bryan Dooley as the new chair of the North Carolina Council on Developmental Disabilities (NCCDD). Dooley of Winston-Salem, who has been a member of the Council since 2016, said, “It is my esteemed honor to be chosen by Governor Cooper’s office to become the chair of the board for the NC Council on Developmental Disabilities. I value each member and staff of this organization, and the work done helps promote and improve the lives of all individuals with developmental disabilities in this great state. I hope I can fulfill my predecessors’ shoes in continuing the fabulous and extremely important work the DD Council aims to accomplish.”
Dooley, who is currently employed as a Community Inclusion Specialist at Solutions for Independence in Winston-Salem, served on the Council on the Financial Asset Development Committee, the Advocacy Committee, and was previously the Council’s Co-Vice Chair.
As the new Chair, Dooley explains, “My main duty is that I will lead the executive committee and float between the other committees to make sure that they have the support they need. Of course, I will work directly with the executive director on any issue that may arise.” He will also preside over NCCDD Council meetings and represent the Council to the public and to policymakers.
“The Council is thrilled that Governor Cooper selected Bryan Dooley as our new Chair. Bryan has already made his mark as an advocate, Council member, and former Chair of Disability Rights North Carolina. This is a critical time for the intellectual and developmental disability community due to the DSP workforce crisis, the 15,000-person waiting list, the pandemic, and the transition to Tailored Plans and 1915i I/DD services. Bryan is just the person to bring his leadership and life experience to lead the Council during this important time for our community,” said Talley Wells, NCCDD Executive Director.
When looking at the needs in North Carolina, Dooley says, “There is a lack of community of inclusion. We still have a long way to go in terms of being integrated. For example, there's a large need for waiver slots, housing, and employment for people with disabilities.” He feels the most important thing the Council is doing is finding ways to support self-advocacy. “When I first started, we funded Partners in Policymaking as well as Advancing Strong Leadership. Now we have an integrated program called ALPNC, which I was very active in the background. At that time, I was also on the board of Disability Rights NC. I helped both organizations create that program, and I look forward to seeing what comes of that.”
Looking forward to the upcoming year for the Council, Dooley says, “I think it's a very exciting time to be involved. We have a great staff, but we need to keep our eye on the Olmstead implementation process. If the state does a good job with that, it will help address a lot of issues such as the Direct Support Professionals’ crisis and lack of waiver slots.”
…and Farewell to our Outgoing Council Chair
A very special thank you to Kerri Eaker of Asheville, NC, who has been a member of NCCDD since 2011, most recently as its chair. Eaker points to the Council’s Medical Health Homes initiatives, the Rethinking Guardianship initiatives, and the work on Public Policy as the biggest achievements during her tenure.
“It is bittersweet to say goodbye to Kerri. I am so thrilled for her in her next phase of life, but it is such a loss for the Council to not have her leadership, wisdom, and presence. During my first two years at the Council, Kerri was an extraordinary mentor to me and advocate for the I/DD (intellectual or other developmental disability) community. She used her experience as a mother and family advocate to steer the Council and make a difference during the pandemic,” Talley Wells, NCCDD Executive Director, said.
“It has been my honor to serve the Developmental Disability community over the years. Thank you for allowing this NC mother the opportunity to share our family experiences that I think help to change our I/DD system to a small degree. In parting, my wish for the Council would be to stay focused on working with the state division offices (Medicaid, Schools, Department of Social Services) to build relationships to work together across systems to support all the citizens of North Carolina and those supporting a loved one with a developmental disability,” Eaker said.
