Well-Being of Ambulatory Adults With Cerebral Palsy: Education, Employment, and Physical Function of a Cohort Who Received Specialized Pediatric Care

Introduction: The transition from pediatric health care and school systems presents enormous challenges for young adults with cerebral palsy (CP). The lack of strong societal support during this seminal life event is well-documented and leads many adults with CP to struggle with independence, higher education, and employment. Despite the relatively high prevalence of CP, information about the experiences and function of adults with CP in our society continues to be limited. The purpose of this project was to describe well-being by assessing education, employment, physical function, walking activity, and utilization of health care in an ambulatory adult cohort with CP who received specialized pediatric care at our center.Method: In this Institutional Review Board-approved prospective study, we invited former patients from our tertiary care pediatric CP center to complete a set of patient-reported outcomes including (1) the Patient-Reported Outcomes Measurement Information System domains of physical function and pain interference, (2) the Satisfaction with Life Scale, and a project-specific demographic questionnaire about education, employment, income, independence, pain, and health care utilization. Participants also wore a pedometer for 8 days to monitor community walking activity. Chi-squared pairwise or t-tests were used as appropriate to compare survey responses and walking activity data between three groups: participants who self-reported, those who reported by proxy, and published normative data from age-matched typically developing adult (TDA) samples.Results: One hundred twenty-six adults with CP consented to participate; 85 self-reported [age 29.7 ± 4.3 years; Gross Motor Function Classification System: I (28%), II (47%), and III, (25%)] and 41 reported by proxy [age 29.7 ± 4.1 years; Gross Motor Function Classification System: I (10%), II (68%), and III (22%)]. For the group who self-reported, high school graduation rate (99%) was similar to TDA (92%; p = 0.0173) but bachelor's degree achievement rate (55%) was higher than TDA (37%; p < 0.001). Despite more advanced education, the unemployment rate in this group was higher than national levels at 33% and was associated with high utilization of Social Security Disability Insurance (33%). Within the self-reporting group, 13% required a caregiver. For the group who reported by proxy, educational levels (73% high school graduates, 0 bachelor's degree) were lower than the general population (p < 0.001) and unemployment was higher than the national level, at 64%. Unemployment in this group was associated with high utilization of Social Security Disability Insurance (85%). Within the proxy-reporting group, 71% required a caregiver. The full cohort demonstrated lower levels of physical function according to the Patient-Reported Outcomes Measurement Information System and less community walking activity compared with TDA references (p < 0.001). This cohort of adults with CP reported significantly higher frequency of chronic pain (48 vs. 12% for TDA; p < 0.001), but less pain interference with daily activities than TDA based on Patient-Reported Outcomes Measurement Information System results (p < 0.001). This cohort reported good to excellent overall health (93%) and high utilization of primary care (98%), but limited utilization of specialty care, specifically orthopedic care (21%) and physical therapy (15%).Discussion: This cohort of adults with CP had similar levels of education as the general population, but had relatively high rates of unemployment, caretaker need, and Social Security Disability Insurance utilization. Although chronic pain was frequent, the impact of pain on work and independent living did not exceed reports from a typically developing reference. Better targeted societal resources for adults with physical disabilities are urgently needed to allow equitable access to employment, promote opportunities for independence, and enable full participation in community life.

Who’s at risk of entering Social Security Disability Insurance? A comparison of application and allowance rates for groups of at-risk individuals

BACKGROUND: The U.S. government has implemented several programs to reduce federal expenditures on Social Security Disability Insurance (DI) and help beneficiaries return to work, but the limited success of these efforts has raised interest in approaches that help workers with disabilities remain in the workforce. OBJECTIVE: This paper provides information on individuals at risk of applying for DI benefits to help build the evidence base for policies that provide workers with disabilities support to eliminate the need to apply for and receive DI benefits. METHODS: Using three panels of the Survey of Income and Program Participation matched to SSA administrative data, we describe the employment characteristics of seven groups at risk of applying for DI benefits before and after application, as well as the outcomes of their DI applications. RESULTS: New private disability insurance recipients were more likely to apply for and receive DI than members of other at-risk groups. However, individuals with high healthcare expenditures made up the largest proportion of successful applicants across the at-risk groups considered here. CONCLUSION: While it seems plausible that individuals within an at-risk group who are likely to apply for DI benefits can be identified and provided supports to help them maintain employment, focusing on a specific group to promote employment over DI benefits may have a limited effect on the DI program because applicants come from multiple groups.

Comparison of Population-Representative and Volunteer Experiments: Lessons From the Social Security Administration’s Benefit Offset National Demonstration (BOND)

The Benefit Offset National Demonstration (BOND) tested a $1 reduction in benefits per $2 earnings increase above the level at which Social Security Disability Insurance benefits drop from full to zero under current law. BOND included a rare and large “population-representative” experiment: It applied the rule to a nationwide, random sample of beneficiaries. BOND also included a parallel “volunteer” experiment: The same offset rules applied to a nationwide random sample of volunteers. BOND’s dual experiments offer a unique opportunity to consider the merits and limitations of these two types of experiments. The findings provide a way to illustrate the limitations of volunteer experiments relative to population experiments when, as in BOND, the goal is to produce impact estimates that are valid for the entire population, not just would be volunteers. We also highlight and compare ethical issues, outreach challenges, and cost considerations for the two types of designs.