How to revamp NH’s disabilities care system

Panel discusses need for changes, collaboration

Before a pandemic altered the world’s and the nation’s view of healthcare, One Sky Community Services in Portsmouth hosted a series of roundtable discussions to examine the issues that concern people with disabilities and the formal systems set up to support their independence and inclusion among a non-disabled majority.

The following discussion took place just prior to the Covid-19 outbreak in the U.S. —before Gov. Chris Sununu declared a state of emergency in New Hampshire. The world has changed since, but the thoughts and ambitions expressed during this discussion about caregiving and collaboration may be even more crucial now.

The participants were Rep. Patricia Lovejoy, D-Stratham; Rep. Joseph Guthrie, R-Hampstead; Michelle Donovan, New Hampshire director of Living Innovations; Rebecca Throop, director of development and communications for the Seacoast Mental Health Center; Billie Tooley, director of outreach and development at One Sky Community Services; and Chris Muns, CEO of One Sky.

The discussion began with a review of the workforce shortage that has been running unchecked across the caregiving and service industries. These are the workers generally described as the “backbone” of service systems, the front-line staff deployed to provide the supports. Indeed, in disability support services, they are the only ones actually providing the services that are planned and managed by administrators and other personnel.

But between the state’s mental health centers and its developmental services agencies, there can be more than 500 vacancies for direct support staff from month to month.

Representative Lovejoy called the workforce shortage “pervasive” in its effects on service delivery across the state as the high vacancy rate pairs with a consistently high turnover rate.

Nationally, direct support professional (DSP) turnover hovers at about 45%, though it’s difficult to tease out more exact figures as DSPs are lumped into a broader category of “home healthcare aide.” Indeed, shortly after this roundtable, U.S. Sens. Maggie Hassan of New Hampshire and Susan Collins of Maine announced in March their sponsorship of a bill to give direct support professional its own specific coding in the Bureau of Labor Statistics’ classification system in order to better track the need for DSPs across the country.

Support services

The difference may seem slight but the work of DSPs with people who have disabilities is as variable as disability itself — from providing physical care in a home to implementing behavior plans in the community and from on-site job coaching to teaching skills to support an individual who is living independently. Community inclusion is the largest piece of that supports puzzle.

Muns explained what those supports might look like each day for people with disabilities who are connected to the developmental services system: “It’s community-based care. They have errands to run, jobs and appointments to go to, activities that they’re involved in. And when they need to get there, it’s the DSP who drives them using their own car.”

At the nearby Seacoast Mental Health Center, there is an ever-present awareness of how one aspect of life supports or undermines another aspect, said Throop. “For us, mental health is about stabilizing someone’s whole life. So as we approach a client, we’re thinking, yes, maybe this person needs therapy, but we also need to make sure their housing is stable, that they have a job … there are all these other pieces. Because no one comes into therapy if they can’t even get transportation, or they can’t feed their family.”

Representative Guthrie pointed out the concerns around caregivers who are aging themselves and the need for respite care for providers who need a break. The healthcare complications of those loved ones, he explained, can exacerbate support concerns by making it too difficult or complex for a family to handle caregiving tasks on its own.

“I think we have to take into consideration people who are care providers of their spouse, or someone within the family, so that person doesn’t have to go to the nursing home,” Guthrie said.

An afterthought

Getting a handle on what defines a DSP and a DSP’s work is just one thread in a complex weave of support needs that run vertically and horizontally through social services.

Service organizations have arrived at a crossroads in their missions, exacerbated now by a pandemic that has underscored the desperate need for caregivers and support providers. Between deinstitutionalization and community inclusion, some in disability supports are questioning the approach that has been taken since the movement to close institutions began decades ago.

In a 2016 working paper published by the Harvard Joint Center for Housing Studies, author Micaela Connery observed, “Our public policies on disability are based heavily in a cultural desire to care for and protect a vulnerable population.” But, she added, “In an effort to protect the safety of individuals with disabilities, we may be creating barriers to their authentic integration into their communities and undermining their self-determination.”

Connery and others have wondered if the support system has been so focused on deinstitutionalization, centering regulations and policies around avoiding institutionalization, that community integration might come as an afterthought. “We understand the process of deinstitutionalization fairly well,” Connery concluded. “Now we need to figure out the nuances of true community creation.”

Echoing that sentiment, Muns suggested, “One of the things we have to do is move beyond just caretaking and help the people we work with get into jobs that match what their passions are. And I think a competency-based DSP model could help with that. But you have to develop the competencies, which gets to training. We have to figure out how to collaborate more, to create a mechanism for people to learn these skills and raise the level of appreciation for direct support positions.”

Muns sees an expanded role for trained DSPs and then the training would also be expanded in a collaborative effort with other organizations. “There are many issues that we’re dealing with — there’s a mental health component, there’s the health component — so you’d have more people working in the system that understand an integrated approach is better. And that could provide more career opportunities for people.”

Lovejoy compared such an approach to a management training program in which students spend six months or a set amount of time working in different departments of a company over a two-year period. Perhaps, she suggested, through the collaborating support of organizations, the timeline of such a program would be different, and people might spend one to two years in different organizations over a five-year period. As long as a skill set was identified and delineated, participants and managers would have clearly defined expectations as targets to complete the program.

“I think you’ve come to the realization that the idea that someone is going to come out of school and be a direct service provider and do that their whole life,” Lovejoy said, shaking her head. “You recognize that you’re going to have that turnover, so maybe we are looking at getting people to do this for two or three years and then they’re going to move on. But you’ll have that pipeline of people who are going to be doing it for two or three years. If the various organizations work together, you could create a path. It’s just that realization that you’re not going to have people work there their whole life doing direct support.”

Older workers

With a professional background steeped in the for-profit sector, Throop wondered if this might not be a good time to borrow development strategies from the corporate world.

“Historically in social services, there is this belief that we either have to get the second-tier employees or we have to be like a nonprofit,” she observed. “The reality is that there are synonymous ways that you can work just like a for-profit. For example, [the Seacoast Mental Health Center] hired a VP of HR who is essentially revamping all our HR strategies.”

Donovan’s organization is also trying different strategies that include a long look at an often-overlooked demographic group in workforce recruitment: seniors and retirees.

“People who have already had their careers, or have already raised their family, and they don’t need to work full time, and they might not need the benefits,” Donovan explained. “We find that they’re the best workers.”

Concerns about funding for collaborative programming and initiatives were voiced as well.

“One of the challenges,” said Muns, “and I hate to say it, is money. If nothing else, you need some seed money to get these things going. And I don’t think any of the organizations in this room have that money just sitting in their budgets. That’s one of the challenges in New Hampshire.”

“The bottom line is we just don’t have the ability to raise the funds to do the services we’re trying to provide,” said Guthrie. “The income is just not there in our system that we have today, but we have to find some way of funding these programs that are just needed, we don’t have any choice.”

In wrapping up, it was agreed that, whether seeking funding sources or reviewing regulatory speed bumps, the time for more collaborating between organizations has arrived.

“I think the consensus seems to be that there can’t be any sweeping changes at the state level,” said Tooley. “We’re going to have to work in a very collaborative environment and solve our own issues and hopefully we can set up a successful template that maybe other areas of the state will want to reproduce and use.”

Lovejoy offered up a primer on working with state legislators: “Being specific is very helpful. It makes it so much easier to do legislation. There are a lot of reps who would be willing to help shepherd it through, but you’ve got to be specific. It’s actually an easy thing to deal with if they know that this is a specific problem and you can get all of your organizations together. Don’t come and say there are 15 problems we need to deal with. Identify specific regulations and then come up with what your roadblocks are and how can we deal with those roadblocks. Start one at a time. Looking at the whole universe, things get lost.”

Jeff Symes is participant directed and managed services coordinator at One Sky Community Services.