July 2021 - Highlights and Hot Topics
Letter from the Executive Director
An Olmstead Tribute
Almost exactly two years ago, in July 2019, my friend Dawn Alford passed away. Dawn was the Public Policy Director for the Georgia Council on Developmental Disabilities. She was a woman with a developmental disability who used a power wheelchair. She had a Medicaid Waiver. She spent her work life championing the ADA (Americans with Disabilities Act) and the Olmstead decision. She also constantly struggled with insufficient support.
As we celebrate the 31st anniversary of the Americans with Disabilities Act and the 22nd anniversary of Olmstead, I think about Dawn, her advocacy, her struggle, and her amazing life. Dawn reminds me that while we have much to celebrate, we have even further to go to truly live out the visions of the ADA and Olmstead. In North Carolina, as we all know, we have over 15,500 on the intellectual and other developmental disabilities (I/DD) waiting list and a direct support professional crisis.
On June 22, 1999, Justice Ruth Ginsburg delivered the decision of the United States Supreme Court in favor of two women with developmental disabilities in Olmstead. Their confinement in institutions violated the recently enacted Americans with Disabilities Act.
The Court said they were being segregated because they were required to live in a setting where everyone shared the same characteristic. They were being discriminated against for two reasons: (1) confining someone who can live in the community into an institution creates unwarranted assumptions that they are unworthy of living in the community and (2) it lessens their ability to participate in the daily activities of ordinary community life.
After graduating magna cum laude from Georgia Tech, Dawn started working for a Center for Independent Living. She helped people living in nursing homes return to the community. She would call me and say, “Talley, these people are just like me. I could be living here because of my disability.”
In the shock of her passing, I wrote the following as a tribute to her and as a reminder to us all of the work we still have to do.
Dawn was an extraordinary advocate who became a lobbyist for people with disabilities. You could always find her and her loving support dog rolling around the Gold Dome. Yet, even with her contacts and friendships throughout state government and the advocacy community, there were multiple challenges to her getting the supports she needed.
This was haunting. She knew what could happen to her if she didn’t have the support she needed when she needed it. She also knew how many others across our state were also not getting the supports they needed. This would make this gentle, spiritual friend a fierce and demanding advocate. This wasn’t about government expenditures or bureaucratic decisions, it was life or death for her and for her brothers and sisters with disabilities.
. . . . . Dawn lived as much as anyone I have ever known. She lived her faith, she lived her friendships, she lived her vulnerabilities. And she loved. She loved God. She loved her friends and fellow advocates. Dawn was Olmstead. She is Olmstead. Dawn Alford will always be Olmstead.
Talley Wells, Executive Director
Public Policy Update as of July 14
STATE UPDATE
Legislative/Budget
The Senate released their budget on June 22 and it was passed by the Senate on June 25. Here are some of the highlights of the Senate budget that are related to the Council’s priorities:
1,000 Waiver Slots: The budget includes funding for 1,000 new Innovations waiver slots over two years. While we are glad to see Innovations slots in the budget, advocates had pushed for a minimum of 2,000 slots (1,000 per year).
There are over 15,500 people on the waiting list and about 750 people are added each year. There is a need for more than 1,000 slots. We were also hoping to see language from HB389/SB350 requiring the Department of Health and Human Services to work with stakeholders to develop a 10 Year Plan for addressing the waitlist.
Waiver Flexibility to the Division of Health Benefits (DHB): In the special provisions of the budget, the state is allowed to come up with new ways to serve people on the waitlist, such as different kinds of waivers or a tiered waiver.
New waivers would still have to be within the amount of funding that was allocated for the 1,000 slots.
ICF-I/DD Direct Support Worker (DSP) Wages: The budget includes $17.5 million to increase the wages of DSPs working in Intermediate Care Facilities (ICF) for people with Intellectual and/or Developmental Disabilities (I/DD). The legislation requires that 80% of funds allocated to ICF providers go to wage increases. The budget also includes additional funding for ICF-I/DD providers.
This wage increase only affects people working in ICF-I/DD facilities/group homes and does not include other community-based DSP’s. We were hoping to see a more comprehensive plan such as the one outlined in HB 914 Support Our Direct Care Workforce.
One-time DSP Bonus: Allocates $100 million in federal recovery funding in Medicaid to distribute one-time $1,500 bonuses to certain eligible direct support workers employed during a specific time period during the pandemic.
This is a one-time payment to some DSPs in the community, and does not cover all DSPs.
Special Assistance Personal Needs: The state special assistance personal needs allowance will be raised from $46 per month to $70 per month.
Students with Disabilities: The budget includes $40 million for public schools to use if enrollment of students with special needs is more than expected.
There is a 12.75% cap on special education funding for school districts that is still in effect so these funds cannot be used if it would put school districts over this cap. We were hoping to see a new funding formula (HB 249) in the budget that would increase this cap.
LME/MCO Funding: LME/MCOs will be allowed to keep $30 million in funds that in previous budget years have been transferred to Medicaid Reserves or the General Fund.
Over the past eight years, around $500 million has been removed from the LME/MCO system. So this begins to restore some of those funds.
The Senate budget is not the final budget. The House is now working on their budget so we are hopeful that some of the areas of concern outlined above will be addressed in the House budget. Once the House budget is approved, a conference committee will be appointed to work out the differences between the two budgets.
Other State News
Many of you may have heard the news that Vaya Health and Cardinal Innovations LME/MCOs are merging. This comes after several counties made the decision to leave Cardinal which left Cardinal with too few counties to support operations. At this time, it seems that Stanley, Forsyth, Cabarrus, and possibly 3 other counties will move to Partners LME/MCO. Orange and Mecklenburg counties will move to Alliance LME/MCO. A couple of other Cardinal counties may move to Sandhills. The remaining Cardinal Counties will likely merge with Vaya. The Department of Health and Human Services (DHHS) continues to work closely with Vaya and Cardinal to work through the details. The goal is to make sure people with disabilities continue to receive services and supports through this transition.
Medicaid Transformation
As NC moves to a new system called Managed Care where private insurance companies will start managing care for people who use Medicaid, a big step happened on July 1 when the Standard Plan began. People who are receiving services through an LME/MCO did not move to the Standard Plan because the Standard Plan does not include support services provided through the LME/MCO. These individuals will continue to receive their supports through LME/MCO and their healthcare through Medicaid Direct. They will move to the Tailored Plan next year.
The Department of Health and Human Services received proposals from the LME/MCOs for operating the Tailored Plans which are scheduled to begin in July 2022. The announcement about which LME/MCOs will be given contracts is expected in August. This announcement was delayed as a result of the several counties who are moving or have requested to move from Cardinal to other LME/MCOs. It is not clear whether this delay will impact the start date for the Tailored Plans.
NC Spending Plan for Federal Funds
The American Rescue Plan Act of 2021 allows NC Medicaid to receive additional funding for its Home and Community-Based Services (HCBS) programs. NC Medicaid recently submitted its “North Carolina Spending Plan for the Implementation of the American Rescue Plan Act of 2021” to the Centers for Medicare & Medicaid Services (CMS) for review and approval. A few highlights of this proposal include:
Waiver Expansion & Waitlist Reduction: NC Medicaid is proposing the expansion of waiver slots and reduction of waitlists for four of NC Medicaid’s HCBS programs. This includes the Innovations waiver.
Home Health Enhancements: Home Health will be expanded beyond the current criteria to include persons who are transitioning from institutions to the community and who have three or more chronic conditions of any type. This effort will enable more people to receive services in the community.
Expand Research-Based Behavioral Health Treatment (RT-BTH) to provide Autism-specific supports to people over 21. This would expand the current supports that are only available to children.
Unified Waitlist Project: This would support DHHS efforts in developing a state waitlist that contains up-to-date information on people who are waiting for Innovations slots and other supports.
*The NC proposed plan includes items that support priorities of the Council. The state is waiting on CMS for feedback and hopefully approval of these funding proposals.
FEDERAL
Infrastructure and Budget Reconciliation
Work continues in Congress related to investments to help our country recover from the COVID-19 pandemic. President Biden and House and Senate Democrats and Republicans have been meeting and negotiating what ideas can be passed with bipartisan support. This means that Democrats and Republicans are working together to pass legislation on funding for those things they can agree on. It has been referred to as an infrastructure package (which includes things like roads, bridges, schools, healthcare, and other government services). .
There are additional items that Democratic Congressional leaders plan to move forward through a budget reconciliation measure. Budget Reconciliation is a tool that makes legislation easier to pass in the Senate; a reconciliation bill only needs a simple majority (51) in the Senate.
A $400 billion investment in Home and Community Based Services (HCBS) proposed by President Biden in his American Jobs Plan is the largest priority of the disability community that was included in proposals. We now know that this priority will move forward as part of budget reconciliation. The Better Care Better Jobs Act (S.2210, H.R. 4231) is the legislative language to pass this historic investment in HCBS.
Abuse and Neglect
A federal appeals court has overturned the Food and Drug Administration's ban on the use of electric shock devices on people with disabilities. In March of 2020, following years of pressure from the disability community the Food and Drug Administration (FDA) banned electric shock devices used to discourage behavior in people with disabilities. The recent ruling said that the FDA did not have the authority to interfere with ‘medical practice’. The shock devices are only known to be in use in one place in the U.S., the Judge Rotenberg Educational Center (JRC) of Canton, Massachusetts, a residential school for people with autism and other psychiatric, developmental or mental disabilities. This ruling allows the use of electronic shock to continue at JRC.
Council Member Spotlight: Senator Sydney Batch
North Carolina Governor Roy Cooper has announced the appointment of Senator Sydney Batch (D-17) to the North Carolina Council on Developmental Disabilities (NCCDD). Senator Batch will join the 39 other individuals on the Council who work to identify problems facing the intellectual or other developmental disabilities (I/DD) community as well as fund innovative projects and initiatives that promote NCCDD’s Five-Year State Plan and the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) for all North Carolinians.
A Holly Springs resident, Senator Batch is a partner in the law firm of Batch, Poore & Williams, PC, where she practices family, juvenile, and appellate law. Senator Batch received a bachelor’s degree in English Literature, a Master’s of Social Work, and a Juris Doctor of Law all from the University of North Carolina–Chapel Hill (UNC-CH). She is a Board member at the Interfaith Prison Ministry for Women and serves on the National Association of Counsel for Children.
Senator Batch would like to see more emphasis on educating those in the judicial system about developmental disabilities, so the court system is properly addressing the needs of people with disabilities involved in the courts. She is proud of the Council’s work on the initiative to increase employability of individuals with developmental disabilities and sees the biggest challenge in the disability world as insufficient state funds for people with I/DD and the lengthy Innovation Waivers wait list.
To see the Council’s current Five-Year Plan, the initiatives they are funding, and the work they are doing, please go to their website: www.nccdd.org.
Nominations due July 30 for NCCDD Awards
Nominations for the 2021 North Carolina Council on Developmental Disabilities’ (NCCDD) Advocacy and Leadership Awards will close this Friday, July 30. To nominate an individual, visit https://www.nccdd.org/the-council/advocacy-and-leadership-awards.html.
The Council’s three awards that recognize disability advocacy are:
- North Carolina Leadership Achievement Award which recognizes an outstanding North Carolina self-advocate whose work has improved the quality of life for people with intellectual and other developmental disabilities;
- Jack B. Hefner Memorial Award celebrates the vision and achievement of North Carolina's families and people with I/DD; and
- Helen C. “Holly” Riddle Distinguished Service Award that recognizes the work of professionals with North Carolina's families and people with I/DD.
The winners will be announced on November 3, 2021 at the NCCDD Quarterly Meeting in Cary, NC.
NCCDD Partners with Area Organizations on COVID-19 Vaccine Drive
Several agencies serving individuals with intellectual or other developmental disabilities (I/DD) took to the road to offer drive-through COVID-19 vaccinations for entire households recently and have plans to do more.
A COVID-19 Vaccine Drive in Gates County, NC, on June 24 was spearheaded by the North Carolina Council on Developmental Disabilities (NCCDD), Disability Rights NC (DRNC), and the Carolina Institute for Developmental Disabilities (CIDD). Albemarle Regional Health Services, Sentara Albemarle Medical Center, Albemarle Commission Area Agency on Aging, Centers for Independent Living, and the Gates County Inter-Regional Transportation System (GITS) were also involved.
The drive was open to individuals ages 12 and up with or without disabilities. Additional drives around the state are being planned in the near future with a focus on counties that are economically challenged and have low vaccination rates.
“The goal is to bring equity to these rural areas, to people with disabilities, who do not have the same access as in other areas. We are working to meet people where they are,” said Iris Peoples Green, DRNC’s Director of Constituent Services.
The event was held at the Gates County Health Department with drive-through service. Within two hours, 25 individuals were able to pull up, choose which of the three vaccines they wished to receive (Pfizer, Moderna, or Johnson & Johnson). Transportation to and from the event was provided for free by GITS. In addition, video remote interpreting was available.
NCCDD, DRNC and their partner organizations are in the planning stages for holding this same event in various parts of the state and are currently working on the Piedmont/Triad area and Elizabeth City, as well as for the Gates County School System.
“Our goal is to reach as much of North Carolina as possible, from Manteo to the mountains,” explained Curtis Hill, the project manager of this event. The event is part of Project ACCESS (All Communities Count Equitably for Safety and Support), a DRNC initiative to increase access to vaccines for people with disabilities, including age-related disabilities. This project is made possible with financial support from the Centers for Disease Control and Prevention (CDC) and Administration on Community Living (ACL). “It was very good to work with NCCDD and to bring in area agencies (who also received funding from CDC and ACL). With partnerships, we can do more of these types of things in the future,” Hill added.
