Chapter on health benefits of walking reviews the many barriers parents face in getting the support they need

Gaps in services magnified by challenges recruiting and retaining direct support staff undermine the potential of walks to help people like Margot get healthy.

Three of the most important questions when we decide to implement an activity or program at KAN with Margot and others are: (1) Does it help her reach an important life goal? (2) Are there practices for reaching the life goal in (1) that are effective? and; (3) What resources do we need to implement any practices identified in (2)?

An invitation to contribute a chapter to the latest edition of the Handbook of Autism and Pervasive Developmental Disorders created an opportunity to collect answers to these questions regarding adults with Intellectual / Developmental Disabilities and/or Autism (IDD/A) that could potentially reach a wide audience of academics and clinicians. We were especially excited because the Handbook is perhaps the most influential reference work in the field of Autism since first published more than 30 years ago. I shared what I learned with regards to the first two questions in a parallel post in Kennett Outdoors. - in sum, there is a lot of encouraging research and related guidance to support the benefits of healthy walks in nature. In this post, I try to answer the 3rd question with respect to programs to build a routine of healthy walks in nature. This answer helps us to begin to appreciate the many barriers that families like our experience trying to implement effective programs for adults like Margot, and some of our reasons for launching KAN.

What kinds of resources do we need to implement a new activity, like regular walks in nature? For children and adolescents with IDD/A, a special education program in a school can usually provide everything needed: an aide to work directly with the person; a teacher to train the aide, develop goals, monitor progress, and provide oversight; specialists like School Nurses, Speech Pathologists, Occupational Therapists, Behavior Analysts, and others to guide the student, the aide, and the teacher; a principal to coordinate these activities across multiple classrooms; a school where all this can take place (including ready-made opportunities for inclusion); a school district to hire staff, manage budgets, and so on. And so it is no surprise Margot's school was a key partner when we first began to explore the benefits of regular walks. We expect, however, that some schools will need convincing that that the benefits of healthy walks justify the time and resources required.

Margot on a walk with Andrew, one of her DSPs

The focus of this chapter is on how everything changes once a person "graduates" from special education, however. Why? There are few programs without long waiting lists that provide anything resembling the breadth of support that schools offer. Moreover, many of these do not accept those like Margot with more intense and complex needs. As a result, too many families like ours in Chester County (and we expect across all of Pennsylvania) have to rely on whatever services they can assemble on their own through self-directed waivers where parents must hire, train, and/or monitor staff.

We also expect that, in many cases, the resulting "program" depends almost entirely on Direct Support Professionals (DSPs). The first problem is that that DSPs and parents are expected to deliver such programs with almost none of the support that the teachers, administrators, specialists, and general infrastructure that the system of special education recognized as essential right up until the moment they graduate. DSPs are expected to do all this with virtually no paid time to be trained, to plan/prepare activities, or to monitor progress.

The second problem is the longstanding challenges with recruiting and training DSPs that also place additional burdens on already over-burdened parents. Part of this can be traced to perennial underfunding of these services: even after 7% increases in payments for DSP services in 2023: the maximum wages I can offer represent a living wage for a unmarried person with no children. As a result, every DSP I have hired who has a dependent has to work a 2nd job, or has left within the year.

This creates a third problem: turnover, with 37-53% of the DSP workforce leaving every year. This turnover creates new pressure for parents of self-directed programs who must not only devote time to hiring and training but then provide direct support when turnover occurs. The lack of training combined with high turnover can create a downward spiral for those with more profound disabilities and their families: as support becomes less consistent, DSPs turnover more quickly, placing more pressure on parents.

This example illustrates how gaps in services and policy can undermine even the most effective programs, especially for the most vulnerable. Healthy walks are one of the easiest, most universally relevant, and most accessible activities to add. We expect that the Fresh Air Self Care FOR ALL online training modules combined with our draft Chester County Outdoor Access Guide we have developed separately through Kennett Outdoors may by all that some need... as long as parents can manage a self-directed program. But our experience with Margot reveals that at least some minimal training, planning, and progress monitoring can be essential for those with more intense or complex needs.

We developed KAN in anticipation of these gaps in support. KAN's goal- to bring together parents providing self-directed programs to not only share DSPs and resources but also to increase our impact. KAN now helps to support 16 hours of programming per week for 2 young adults in addition to Margot, with the support of 4 DSPs working part- and full-time. A 3rd young adult will soon begin to work 10 hours each week at KAN supported by her school program. This will ensure that she can transition seamlessly once she "graduates" in the summer of 2027. This arrangement allows DSPs and related staff to problem solve together and support one another. It also allows our volunteeroing to not only increase overall but become more efficient as adults take on complementary roles depending on their interest and skills.