Advance Care Planning for Individuals With Intellectual and Developmental Disabilities: A State-by-State Content Analysis of Person-Centered Service Plans.

The team read every state’s person-centered plan template for Medicaid waiver services. They looked for words about aging, dying, or future medical choices.

They checked all 50 states plus D.C. No people were tested; the work was a paper review.

Most plans mention ‘future’ or ‘health,’ but few spell out end-of-life wishes. Language swings from none at all to one short line.

No state gave a clear section for hospice or stopping treatment choices.

de Leeuw et al. (2024) asked why plans are thin. They found families feel scared and staff lack forms. The 2024 paper is the ‘next step’ after Jacqueline et al.; it shows the human reasons behind the blank spaces.

Vassos et al. (2016) proved that person-centered plans can boost community outings. Their positive results make the missing end-of-life parts feel even larger. Plans work for daily goals but stay silent on dying.

Walton (2016) warned that adults with IDD are living longer and health systems are not ready. Jacqueline et al. show that paperwork still ignores the warning.

Kruithof et al. (2022) recorded parents who want to lead life-or-death choices for their adult children. The state forms Jacqueline et al. audited give families almost no room to write those wishes down.

You can fix the gap today. Open any PCP you write or review. Add one page titled ‘My Future Medical Wishes.’ List preferred hospitals, comfort measures, and who can speak for the person. Bring the page to the next ISP meeting. You just created the section most states still lack.