February 2019 News Notes


In a most recent study, individuals with Down syndrome continue to learn new skills into adulthood. Most people with Down syndrome are able to walk by 25 months of age, speak reasonably well by the time they’re 12 years old and manage their own hygiene by age 13, according to findings in the American Journal of Medical Genetics Part A. The research is based on a survey of more than 2,600 parents of those with Down syndrome — including young children all the way up to adults in their 40s — in the United States and the Netherlands.

Parents who participated in the study, were asked about their children’s skills in 11 areas: walking, eating, speaking, grooming/personal hygiene, reading, writing, preparing meals, working at a job, going on dates, traveling and living independently. The study found that the majority of those with Down syndrome can work independently by age 20. Meanwhile, roughly half can read and write reasonably well by the age of 31. And, about a third live independently by that point.

This is contrary to some public beliefs.  Per this study, people with Down syndrome never stop learning, and functional skills can still be attained and improved well into adulthood. This provides a benchmark based on the responses of thousands of parents. that can help clinicians know when children may be falling behind their peers with Down syndrome and, when necessary, refer parents to additional supports, resources and therapies. The Trump administration is planning to rethink existing regulations that radically altered the transition from school to work for people with disabilities.


The U.S. Department of Education is expected to issue a proposal this month changing how the federal Workforce Innovation and Opportunity Act (WIOA) is implemented. The 2014 law requires that individuals with disabilities age 24 and younger pursue competitive integrated employment before they can work in jobs paying less than minimum wage. Those already working for what’s known as subminimum wage can continue to do so, but must receive regular career counseling and information about training opportunities. Regulations spelling out the rules were finalized and took effect under the Obama administration. However, last year the Education Department signaled that it would issue a notice of proposed rulemaking in September 2018 to “amend” the regulations. Nothing materialized at that time, but a fall agenda for the agency indicated that the new proposal is now slated for January.

Some believe that opening the WIOA regulations will undermine implementation of the law, which establishes competitive integrated employment (CIE) as a clear national priority built on the goal of economic self-sufficiency established in the bipartisan Americans with Disabilities Act. The letter indicated that the current regulations are limiting individuals with disabilities to find and keep employment. Some believe that the regulations are to narrow. At issue is what’s considered an integrated setting. For example, some vocational rehabilitation agencies may not be referring those with disabilities to a building maintenance position in a courthouse because the crew is exclusively comprised of workers with disabilities even though the work is conducted in a public setting and might offer interactions with judges, lawyers and others. Proponents of the regulations, however, insist that too little time has passed since they took effect in 2016 to make such assertions. And, they believe that any issues can best be addressed without altering the regulations themselves. An Education Department spokeswoman indicated that the agency’s work on the issue is ongoing and will continue to hear from diverse stakeholders with varying perspectives on this issue and is considering all feedback.

Best Regards,

Kevin K

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