Smith-Magenis Syndrome and Social Security Administration's Compassionate Allowances Initiative: An Evaluative Review of the Literature.

Tonnsen et al. (2016) looked at every paper on Smith-Magenis syndrome. They wanted to know if the Social Security Administration should fast-track disability benefits for these families.

The team read all studies up to 2016. They checked sleep problems, behavior issues, and medical needs.

The review shows strong evidence. Smith-Magenis syndrome causes severe sleep loss, self-injury, and intellectual disability.

Because of this, the authors say SSA should add the syndrome to the Compassionate Allowances List. This move would cut wait time for aid from months to weeks.

Anonymous (2018) extends this work. They ran the first ABA study on children with Smith-Magenis. A quick functional assessment showed escape-maintained hitting. Differential reinforcement plus extinction cut the hitting to near zero.

Gilmore et al. (2022) reviewed group social-skills training for teens with mixed disabilities. Their paper sits in the same service-delivery world. It reminds us that older youth with rare disorders still need proven social programs.

Cohen et al. (2018) checked how often single-case studies measure social validity. Only 28 studies met the full criteria. This gap matters: without social-validity data, families and funders may doubt the worth of ABA for rare disorders like Smith-Magenis.

You now have two tools. First, use the review to speed families through the red tape of disability benefits. Second, borrow the Anonymous (2018) protocol: a 10-minute functional analysis, then DR plus extinction for problem behavior. Document social validity so payers keep funding our work with this ultra-rare population.