The Court’s Order in Samantha R. outlines benchmarks for expanding community-based services for people with intellectual and developmental disabilities (I/DD). It requires the state to help people transition from certain congregate settings to community-based settings over an 8-year period, and eliminate the waiting list for services over the course of 10 years. The Order also provides that new admissions to certain settings – defined in the Order as “institutions” – will cease after 6 years, except for short term admissions for respite or stabilization. The Order does not affect group homes; the facilities covered are limited to Intermediate Care Facilities (ICFs), including the three state-operated Developmental Centers, and Adult Care Homes.
Since the Order was issued, a number of stakeholders have raised concerns about the viability of smaller ICFs over the long term. The fear is that an end to new admissions will mean that some ICFs will close when people leave and are not replaced with new residents. Concerned stakeholders include providers worried that ICFs will go out of business, and families who want their loved ones to continue to have a choice to stay in a well-run, small ICF.
DRNC takes these concerns seriously. We believe there are solutions that do not compromise the central tenet of access to the community for all who choose it. There are about 650 people currently living in small (6 or fewer bed) ICFs in North Carolina. Some people with I/DD live in larger but specialized settings. Each person’s situation matters. As we work toward implementation of the Order, all services and planning must be person-centered regardless of setting; everyone must have an informed choice.
To create genuine choice, service models for non-ICF settings can and should evolve. Under the current system, home and community-based settings, including group homes, receive less funding than ICFs; another way of looking at it is that it costs more to house people in ICFs. The Order gives us the impetus to finally change the funding model. It also gives us a chance to raise the bar on quality and create career opportunities in communities across the state. In that process, the focus should be on true access to the community, and not on the label attached to a setting.
We also have to address the elephant in the room: some ICFs – even the small ones – are not good places to live and are not integrated in their communities. This is also true of some group homes. Because of our unrestricted, federally-mandated access authority, Disability Rights North Carolina monitors facilities across the state and is deeply aware of shortcomings across provider types and settings. We should find a way to support high quality providers as we evolve the service system, but should not prop up those that are falling short. Particularly concerning to DRNC are those operated by out-of-state corporations that are steadily buying up facilities and putting profits above people.
We can use the next 6 years to improve quality and integration across settings, regardless of label. The goal is not implementation of the Order strictly for its own sake, but to have outcomes that help people with I/DD live their best lives. With genuine collaboration, we can meet the concerns discussed above and improve the quality and availability of services for people with I/DD. If, after there has been genuine effort to adjust our current model, we need more time or new ideas, we are open to discussions about whether the Order should be amended in some way. For now, we must view the Order as a means of accountability, a spur to make long-needed changes, and a call to get to work fulfilling promises.
When it comes to changing systems in North Carolina, DRNC always chooses litigation as a last resort; DRNC has invited conversation with the state about this issue over the years and throughout the litigation process. DRNC wrote to DHHS before filing suit in 2017, outlining concerns with the I/DD service system and asking for an open dialogue about solutions. We filed suit over 3 months later, having received no response. We tried again in 2018, sending the state a five-page outline of ideas for addressing what we saw as the root causes of problems within the I/DD system, and asking for collaboration. Here’s what we proposed that we do together:
Develop a transparent and cooperative planning process that includes the parties, and both proponents and critics of change. In order to make lasting change and ensure long-term sustainability, we believe the transition of I/DD services should include and directly address the concerns of families, residential providers, and other individuals and groups whose interests are in tension with the changes proposed [in the letter] or solutions that may evolve in the future.
We met with DHHS and they promised to follow up but never did. We would have preferred to start working cooperatively years ago but we can only control our part of the equation. DRNC hopes that the Court’s Order – along with community support for long-awaiting changes – will give us the opportunity to have the conversations we were asking for in 2017 and 2018.
Response to the Order has been overwhelmingly positive, with many expressing joy over the prospect of better services. One of our co-counsel recently received the following email:
I just learned about the NC ruling that requires the state to adhere to the law and provide adequate community supports for people with I/DD. As the mother of a teenager with I/DD, I lie awake at night worrying about how to ensure she can live well as an adult. This gives me hope.
We all want the same thing: real choices among high quality options for people with I/DD. Samantha R returned to the community after her parents heard for years that it would be impossible. Making it happen for others will require vision and for us to change how we approach services. Deciding not to change isn’t an option. We can no longer talk only about obstacles; we have to work together toward solutions centered on people with I/DD and their families and communities and give them more reason to hope.