General health status in young people with intellectual disabilities with and without Down syndrome in, and transitioning from, special education: findings from the National Longitudinal Transitions Study-2.
Health in youth with ID stays flat across school exit unless you step in early.
01Research in Context
What this study did
Granieri et al. (2020) tracked the health of youth with intellectual disabilities. Some had Down syndrome and some did not.
They used a big U.S. survey called NLTS-2. Kids were still in special school, then they were checked again after leaving.
The team asked one simple question: did health get better, worse, or stay the same during the move to adult life?
What they found
Health did not improve. Most youth kept the same fair or poor rating.
Low family income and being Hispanic predicted worse health.
No magic jump in wellness appeared once school ended.
How this fits with other research
Sasson et al. (2022) looked at the same NLTS-2 group but counted jobs and daily skills. They found half worked and most lived with family. Together the papers show: life can look okay on the outside while health stays stuck on the inside.
Capio et al. (2013) studied adults with Down syndrome who had not switched to adult doctors. Those adults paid more medical bills and saw more specialists. E et al. now show the problem starts right at school exit, so the clock for better hand-offs starts earlier.
Maine et al. (2020) reviewed 16 exercise and diet programmes for young adults with IDD. They say such plans might help, but proof is thin. E et al. add a warning: without active care, health simply sits still.
Why it matters
You cannot wait for health to fix itself once the diploma is handed over. Build medical check-ins into the transition plan the same way you build job tours. Ask families who their adult doctor will be, schedule the first visit before graduation, and flag any youth from lower-income or Hispanic homes for extra follow-up.
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02At a glance
03Original abstract
BACKGROUND: There has been little prior investigation of the general health of young people with intellectual disabilities across transition, nor separately for youth with intellectual disabilities with or without Down syndrome, despite general health being a strong predictor of subsequent health service use, hospital admissions and mortality in the general population. We aimed to investigate general health status in youth with intellectual disabilities with and without Down syndrome over the transitional period and quantify the extent to which personal characteristics, parental relationship and household income are associated with general health status. METHODS: The National Longitudinal Transitions Study-2 includes a nationally representative sample of youth receiving special education services aged 13-17 years at wave 1, followed up over 10 years in five waves of data collection. Data on general health status of youth with intellectual disabilities with and without Down syndrome were obtained from parent reports. We summarised overall demographics and general health status and plotted general health status for those who had health data available for all five waves. We then used random-effects ordered logistic regression to investigate whether wave of data collection, age, sex, Down syndrome, ethnicity, parental relationship status and household income are associated with general health status. RESULTS: At wave 1, data on intellectual disabilities were available on 9008/9576 (94.1%) young people, and 871/9008 (9.7%) of them had intellectual disabilities, of whom 125/871 (14.4%) had Down syndrome. Youth with intellectual disabilities with or without Down syndrome had low rates of excellent or very good health. Across waves 1-5, there was a shallow gradient in the proportion of youth with intellectual disabilities reporting excellent/very good health, from 57.7% at 13-17 years to 52.6% at 21-25 years, being more marked for those without Down syndrome (57.8% at 13-17 years to 51.8% at 21-25 years). However, contrary to our expectations, an ordinal measure of general health status did not decline over this transitional period and did not differ between youth with and without Down syndrome. There was a gradient with higher income associated with better health, significantly so over $50 001 (odds ratio = 0.559, 95% confidence interval 0.366-0.854). Poorer health was experienced by youth with Hispanic, Latino or Spanish ethnicity (odds ratio = 1.790, 95% confidence interval 1.051-3.048). Female sex and parental relationship status were not associated with health status. CONCLUSIONS: Young people with intellectual disabilities have bad health, and require support across all ages, including transition. Schools, teachers and staff in transitional services should consider health, and health care and support during transitional planning due to change in service provision and be aware of ethnicity and the stressful effects of low household income. This is important as interventions based on provision of greater support can prevent adverse consequences.
Journal of intellectual disability research : JIDR, 2020 · doi:10.1111/jir.12781