June 2, 2024: Article published by WFAE 90.7: Charlotte's NPR News Source at https://www.wfae.org/health/2024-06-02/road-map-for-providing-more-care-for-people-with-disabilities-has-bipartisan-support

Advocates for people with intellectual and developmental disabilities have a long list of needs that they would like state lawmakers to address.

This year, though, they’re focusing on two main initiatives.

They would like to see the hourly pay rate for direct support professionals increased to $18. These workers help their clients with a range of daily activities such as ambulatory services, food preparation, employment, transportation and, in some cases, medication under the delegation of a nurse.

The advocates also are pushing for lawmakers to fund at least 1,000 more slots in the NC Innovations Waiver program, a pot of funding designated for community- and home-based services through Medicaid for people with intellectual and developmental disabilities. Those services include a variety of supports for the individuals, their families and caregivers — from crisis management to home modifications to employment assistance. The program is designed to help people with disabilities live in the community more fully without the need for institutional care.

Those recommendations are part of House Bill 1003, or HB1003, an omnibus legislative proposal to improve conditions for people with intellectual and developmental disabilities in North Carolina.

A group of state lawmakers gathered on May 14 with disability rights advocates for a listening session and a news conference to outline their wish list for this legislative session and answer questions about the omnibus bill.

“North Carolina is where the weak grow strong and the strong grow great," Rep. Zack Hawkins, the bill's main sponsor, told reporters.

What’s in the bill

Hawkins described the proposed legislation as a "road map" for how to meet long-standing needs highlighted by North Carolina residents with intellectual and developmental disabilities, their families and caregivers.

The bill was filed May 2 with primary Democratic and Republican sponsors from the state House of Representatives. In addition to Hawkins, Democrat Sarah Crawford of Raleigh and Republicans Donna White of Clayton and John Bradford of Cornelius signed on as primary sponsors of the legislative proposal.

In addition to funding wage increases for direct support professionals and creating more waiver slots, the bill also addresses the use of restraint and seclusion for school children with intellectual and developmental disabilities.

Another component of the bill would require the state Department of Health and Human Services to study the feasibility of covering a new Medicaid “Community Activities and Employment Transitions” service for people with disabilities who are 16 and older.

To address transportation needs, the bill calls for the state Department of Transportation to create an Office of Accessible Transportation and Mobility.

A long waiting list

At the news conference in mid-May, lawmakers acknowledged that it might be a difficult task to get all segments of the omnibus bill approved in this legislative session. However, Hawkins described this legislature as "one of the most IDD-friendly general assemblies,” using an acronym for intellectual and developmental disabilities.

Hawkins and his co-sponsors told reporters they hoped they could persuade their peers in the General Assembly that increasing the hourly rate for direct service providers will go a long way toward easing workforce shortages that can have a detrimental effect on quality of care.

They also think they have a strong case for increasing the number of slots available for Innovations Waivers. The waitlist for the assistance was at 17,870 people on May 30, according to the DHHS Innovations Waitlist Dashboard.

In a settlement agreement reached with Disability Rights North Carolina, a legal advocacy agency in the long-running Samantha R case, DHHS agreed to advocate for the General Assembly to increase the number of Innovations Waiver slots.

"We're talking about people's lives and their abilities to live," said Sen. Lisa Grafstein, a Raleigh Democrat, bill co-sponsor and an attorney who has represented Disability Rights North Carolina in court cases.

The Innovations Waiver program is supposed to provide an alternative to intermediate care facilities, which provide care for people with significant functional limitations due to their disability. To be eligible, people must also be enrolled in Medicaid and require active treatment for their disability.

The Innovations Waiver is administered by the state’s four regional managed care organizations that specialize in coordinating care for people with mental illness, substance use disorders, and intellectual and developmental disabilities. As part of the state’s Medicaid program, care managers at these organizations develop an individual support plan and help connect people to services.

Recipients of Innovations Waivers can request up to $135,000 in services annually, with some flexibility. Not all waiver recipients will need the full amount, but that’s the maximum the state sets aside for each waiver.

Personal experiences

Matthew Schwab, an Apex resident with Down Syndrome, spoke at a May 14 listening session with lawmakers at the Legislative Building. In addition to being a well-regarded public speaker, Schwab works at a local restaurant and volunteers at GiGi's Playhouse, a center in Raleigh that offers an array of programs for people with Down Syndrome.

"I am who I am because of the waiver," Schwab said during the General Assembly listening session. He described himself as "one of the lucky ones."

Donna Beckmann, who was an advocacy and outreach director for the North Carolina Down Syndrome Alliance, would like to see her son Thomas benefit from the waiver program too.

Thomas became a high school graduate in 2023 and has been living with his parents. He has been on the waiver waitlist since July 2012. "If you have a child or grandchild graduating from high school this year, my son has been on the waiting list since that kid started kindergarten," said Beckmann at the listening session. Beckmann said she had to leave the workforce to care for him, a common occurrence among parents with adult children with intellectual and developmental disabilities.  

Rep. Crawford is a co-sponsor on the bill and is chief executive officer at the Tammy Lynn Center, an organization that provides an array of services for young people with intellectual and developmental disabilities in Raleigh. She hears from parents, she says, who have waited for more than a decade for a waiver slot. Many of them are concerned their children might not live long enough to benefit from the program. 

"We must create more spots, and we, the General Assembly, have it within our power to do exactly that," Crawford said during the news conference.

Housing problems

While advocates recognize the importance of expanding Innovations Waivers, they also stress the need to ensure that there are affordable and inclusive housing options for people who receive waivers.

In North Carolina, the median rent is $1,855, according to Zillow. In the state, there is a growing affordable housing crisis, with a shortage of affordable rental homes and significant cost burden for low-income renters. 

The federal department of Housing and Urban Development does offer housing subsidies for people with intellectual and developmental disabilities through its Section 811 program. However, in order to meet 811 requirements, properties must have a minimum of five units. For people who want to live in their own communities, this can prove restrictive. 

The proposed legislation includes a provision to expand affordable housing access. It calls for a plan to convene a working group for five years to develop a rental subsidy program for people with disabilities. 

As part of that plan, according to the proposed bill, the program should create 200 rental subsidies statewide annually, resulting in 1,000 subsidies over the course of five years.

"I'm thrilled that we have any rental subsidies in the bill," said Laura Wells, director of HOPE North Carolina, an organization promoting inclusive housing options for people with intellectual and developmental disabilities.

The rental subsidies program would be modeled after similar programs in Virginia and Maryland, according to Talley Wells, executive director of the North Carolina Council on Developmental Disabilities and husband of Laura Wells. He and his colleagues hope it can allow more people to live meaningful lives “in their own houses.” 

Most advocates for the disability community agree the goal is to move away from the institutionalization of people with intellectual and developmental disabilities. However, some caution against focusing entirely on living in the community. 

“We want people to have an array of choices,” said John Nash, executive director of Arc of NC, a service provider and advocacy organization for people with intellectual and developmental disabilities. People who suffer from early onset dementia, for example, could benefit from living in group homes, according to Nash. Instead of people in the state “choosing sides” and advocating for one type of housing, Nash prefers that the community work together to maximize all high-quality options.  

Arc of NC owns at least 2,600 housing units statewide — including group homes, as well as small apartment buildings, duplexes and condominiums — that are managed by a variety of nonprofits. Several of these are part of the Section 811 program. 

The debate over housing highlights a larger disconnect between organizations working to help people with disabilities, something Laura Wells described as a “lack of coordination” that leads to barriers for affordable housing options integrated within communities. “People feel like they don’t have any options,” she said. 

However, she thinks provisions in the omnibus bill, including the subsidies, could help resolve some of those issues. 

“I think it would be an amazing start,” said Wells.