8 Grim Facts About Unmet Mobility and Therapy Needs Among Children with Disabilities – and Ways You Can Help
Part of the challenge and satisfaction of my job as a pediatric physical therapist is providing evaluations, recommendations, and implementing adaptive or mobility equipment for children with disabilities. A new, carefully designed and chosen gait trainer can open the door for a new ability to independently move and explore for a child or a lift system can make the difference between safely caring for a child at home or wear-tear and possibly injury to a dedicated caregiver.
This week, for example, “fun” for me at work included fitting a lightweight manual wheelchair to a 5 year old so that he can keep pace with his classmates in kindergarten next year, showing a teenager the independence he will gain if he uses a lightweight manual wheelchair with a power assist instead of being homebound, and testing out 3 different options of gait trainers to find the perfect choice for an almost 4-year-old to keep up with her emerging speed, agility, and independence – in hot pink, no less!
A grim picture painted:
Recently, my professional journal included an article as part of their “Health Services Research Special Topics” on “Which Children are Not Getting Their Needs for Therapy or Mobility Aids Met?” It was describing an analysis of data from the 2009-2010 National Survey of Children with Special Health Care Needs. The purpose of the analysis, according to the authors, was to identify the prevalence of and factors associated with therapy and mobility aids needs and unmet needs as a baseline prior to the full implementation of the Affordable Care Act (ACA) to determine it’s impact on these two areas.
The authors identified a need (unmet therapy and mobility aids) and determined baselines prior to changes in our health care systems to see if we’ve improved in this problem area or not. Important.
Sadly, the article describes the dire situation of what many families and therapists are experiencing – significant unfulfilled mobility aids (such as walkers, wheelchairs, gait trainers) and occupational, physical, and speech therapy needs among children with special health care conditions.
Here are 8 alarming facts this study uncovers:
- nearly 1 in 5 children with special health care needs (developmental disability, developmental delay, or medical condition) reported unfulfilled therapy needs
- there were more unmet needs for therapy than for mobility, interestingly
- children of 3-5 years of age had the highest reported unmet need for therapy at 20.9% – more than 1 in 5 – AND for mobility aids at 12.1%
- more than 70% of the children with unmet needs for therapy or mobility aids had a diagnosis of “developmental disability,” which the authors defined as children with cerebral palsy, Down syndrome, autism, traumatic brain injury, cystic fibrosis, muscular dystrophy, arthritis, cardiac anomalies, intellectual disability, or ADHD.
- children with the greatest impact on their function from their developmental disability, developmental delay, or medical diagnosis, had 33.5-46.4% unmet therapy needs. Those who need therapy the most had the most unmet needs.
- children with special health care needs whose condition “always” or “usually” affected their function had nearly 2 to 3 times higher odds of having an unmet therapy need than those whose condition affected their function “very little” of the time.
- the most commonly reported reason for unmet therapy needs were:
- cost 23.1%
- lack of resources at school 17.3%
- unavailability of services or transportation 15%
- problems with health plan 14.3%
- appointments unavailable or not convenient 12.2%
- risk factors for having an unfulfilled therapy or mobility aid needs included:
- diagnosis of developmental disability
- having a condition that “always” affects the child’s function
- insurance discontinuity (being uninsured during the previous year)
Our children with disabilities deserve better.
We know that those with known diagnoses such as cerebral palsy or Down system have a natural history of neuro-musculo-skeletal impairments that impact their function “always” or “usually” and the research is clear about the benefits of therapy and assistive technology/mobility equipment. Yet, frequently we are not providing for these needs in the children who need them the most.
What can we do? We can:
- make sure children with disabilities have access to therapy services, especially in more rural areas, by providing quality pediatric content in our DPT programs, mentoring new graduates and therapists who seek to become pediatric specialists
- educate and fight for appropriate reimbursement rates, especially in the Medicaid systems, so salaries are competitive with therapists in other types of therapy practices to ensure sufficient access to pediatric services
- make sure our policies in our schools and clinics support high quality, evidence-based services for children with special health care needs so our children are getting the best outcomes, especially when resources are limited
- find accessible and efficient ways to write letters of medical necessity for equipment and for therapy services so gaps in both areas are minimized
- challenge the “status quo” by petitioning health care plans and insurance companies, using available clinical research, as they design and implement policies for funding necessary therapy services and equipment; often times they are using old research data and non-pediatric specialists to determine the availability of therapy and equipment
- ensure that we are not limiting our children’s potential by the lack or gap in therapy or equipment; their time to gain skills is limited and precious, and unmet needs mean critical time wasted and potential skills and independence lost
If we work together and diligently as providers and consumers, maybe we can change this dire picture into one of hope and potential for children with disabilities. Let’s try.