Lifespan Care for People with Disabilities

Providing activity and mobility interventions for young adults with disabilities after they leave the school system is important, particularly for maintaining quality of life. Unfortunately this outlook is not shared by everyone. A physical therapist working with young adults with developmental disabilities wrote this to me after her efforts to get adaptive equipment for her clients had been frustrated: “More often than not I’m told that there is no point in introducing/reintroducing the use of standing frames and gait trainers with this age group since they are no longer developing and there is no evidence that there are any benefits.”

She went on to describe a 21-year-old student of hers with spastic quadriplegia who because of his contractures is unable to use a stander. However, he has succeeded in mobilizing himself in a Pacer gait trainer with full trunk support by pushing off with the tips of his toes. He loves this. But the team argued against its use with the following points:

1. A Pacer is to be used to retrain gait pattern, not to be used as a leisure activity.
2. The student is at risk for fractures.
3. Although the Pacer increases his independence, he should focus on using his indoor electric wheelchair instead, which would also give independence.
4. He can get the same exercise in a hydro-pool.
5. He won’t be able to do it at home or in the community after he leaves school, so he shouldn’t be set up for a disappointment.

I find this viewpoint appalling, but I fear it may be all too common. There seems to be a lack of understanding that a person with developmental disabilities, as with all of us, has a life to live beyond age 21. Fundamental quality of life issues are at stake here. We cannot let funding difficulties strip us of our key advocacy role for people with disabilities

A Continuum of Development

Perhaps a broad view of these issues will help put things into perspective. First is the concept of human development. Multiple systems – physical, cognitive and emotional – interact to produce the development of an individual. Can we put a time-frame on this process? In the book The Future of Disability in America, Field and Jette point out that there is much evidence that suggests continued neurological, emotional, and intellectual development of young people well into their 20s.¹ In fact, emotion and cognition peak only in the third and fourth decades of life (Harbourne R, handout, APTA PT 2012). It is also well known that physical development is a driver for emotional and cognitive performance. This is a simplification of a complex process, but it is evident that because of the contributing factors, development follows a continuum that extends far beyond the age of 21.

Learning Potential

But what if “development” does stop at a given age? There is still the concept of learning. Learning can occur at any stage of life with enough practice and repetitions. In the field of neurology we see gait being re-learned after SCI and TBI insults with intensified practice sessions. Then there is the Mobility Opportunities Via Education (MOVE™) Program for adults. MOVE™ is a program that teaches meaningful life skills to children and adults with developmental disabilities with the goal of independence and improved quality of life. The key to learning in the MOVE™ program is practice and the use of adaptive equipment to provide support where body strength is lacking. Take for example a study conducted by Dr. Whinnery in which adults with long-standing developmental disabilities and no weight-bearing or ambulatory skills participated in the MOVE™ curriculum at their day habilitation facility. The result was an improvement in their functional mobility skills.²

Similar findings were noted in an unpublished pilot study conducted by the Cuyahoga County Board of Mental Retardation and Developmental Disabilities. The purpose of this study was to pilot the effectiveness of the MOVE™ protocol on improving functional skills in a population of six adults with developmental disabilities. Over the course of eight weeks they practiced skills important to their ability to function such as transfers, gait, and standing. The post test showed that each one made progress in these areas.³ It would be hard to overstate the importance of basic skills such as these for a person’s quality of life.

Lifespan Healthcare Models

There are also initiatives that focus on providing healthcare that is relevant and beneficial to an individual well into adulthood. These are the life-course approach, Healthy People 2020 (HP2020), and the International Classification of Functioning, Disability and Health (ICF). These initiatives point to our changing perceptions of disability and the growing importance of maintaining quality of life for all individuals. All these approaches look beyond the “episodic” model of health care.

My first introduction to the life-course approach was at conference I attended a few years ago where researchers in the fields of pediatrics and neurology gathered to look at the future of our healthcare systems. The presentations focused on implementing a life-course approach to caring for people with disabilities. This means looking at how early life experiences influence a person’s subsequent health and functioning. It recognizes that each life stage influences the next and asks “what interventions can be instituted to slow the progression of earlier adverse effects and reverse any potential damage.”⁴

Similarly, there is Healthy People 2020. HP2020 has set out 10-year national objectives aimed at improving the health of all Americans. This is spelled out in one of their overarching goals to “promote quality of life, healthy development, and healthy behaviors across all life stages.”⁵ Specifically HP2020 acknowledges that people with disabilities “must have the opportunity to take part in important daily activities that add to a person’s growth, development, fulfillment, and community contribution.”⁶ Going back to our 21-year-old student, this means it doesn’t matter whether gait training in a Pacer is scientifically proven to be beneficial for people with CP, but it is important that this young adult is happy in the Pacer and self-mobilizing as this demonstrates participation in an important daily activity and the fulfillment in doing so.

Then there is the International Classification of Function (ICF), the health classification framework of the World Health Organization. The ICF focuses on the health of an individual as opposed to the disability. Health is built upon and improved through enhancing access to meaningful activities and participation in society as a whole. This is made possible through environmental changes, universal design, and the use of adaptive equipment and technologies.

So the life course approach, HP2020, and the ICF all contribute to an alternate way of addressing long-term disability. Additionally, there is evidence to show that physical activity in adults with disabilities is beneficial. Although preliminary, this evidence does raise questions and points towards the direction we should be heading with our interventions.

Activity and Health

An article by Dr. Damiano et al that appeared in the journal Physical Therapy in 2006 draws on research to show the trend of increased physical activity in the forms of strengthening and treadmill training to improving mental and physical health as well as promoting neural recovery in people with CP.⁷ Other studies point to the role physical activity can have in decreasing the common complaints of chronic pain and fatigue in adults with CP.^8,9 Then there are some smaller sample and case studies showing that different types of resistive training improve the functioning and strength in this population as well.^10-13

Because people with developmental disabilities are often predisposed to weakness and osteoporosis, their lives tend to be more sedentary.^14,15 At present, no hard evidence exists for the “benefits” of using adaptive equipment to mobilize these adults, but there certainly is evidence that sedentary lifestyles increase comorbidities. A study done by Frey et al noted the incidence of obesity in adults with developmental disabilities to be 43%.¹⁶ In another study, 45% of men and 56% of women with Down syndrome were overweight¹⁷ and in a sample of adults with developmental disabilities, 32% of women and 54% of the male subjects had blood cholesterol levels greater than 200 mg/dl.^18,19 Obviously it’s urgent that physical activity be incorporated into the lives of adults with disabilities in order that they maintain their optimal functional status for as long as possible.

So going back to the young person needing a Pacer that I started out with, in essence, what we are discussing is more than equipment or even whether there are any benefits to physical activity in this population. What we’re talking about is a complete shift in thinking to incorporate a larger vision of healthcare and quality of life goals. As our students with developmental disabilities maintain their health and become adults, now living longer than previously thought possible, it is our obligation to provide them the means to live healthy and active lives that bring them the dignity, joy, and fulfillment that every human being should enjoy. We must advocate for quality of life for every person.