Speaking out for People with
 Intellectual and Developmental Disabilities

A new wave of progress in healthcare is coming

EP Magazine * August 2013 * by Matt Holder, MD, MBA, Chief Executive Officer of the Lee Specialty Clinic and the President of the Academy of Developmental Medicine and Dentistry

On June 11, 2014, Governor Steven L. Beshear presided over the ribbon cutting ceremony for the Lee Specialty Clinic in Louisville, Kentucky. While this ceremony celebrated the opening of just one clinic in one city in the United States, this single event marks one of the most significant developments in healthcare for individuals with intellectual and developmental disabilities in decades.

The Lee Specialty Clinic focuses exclusively on people with intellectual and developmental disabilities. Its core services include primary care medical services, specialty medical services, dental services, psychiatric and behavioral services, physical therapy, occupational therapy, speech therapy, and crisis intervention services. These services are provided in an interdisciplinary fashion, whereby the professionals who provide them communicate with each other for the benefit of the patient. The Lee Specialty Clinic also serves as a teaching and research program where students from any healthcare discipline can learn, intensively, how to care for people with I/DD. Finally, and perhaps most important of all, the clinic model is reproducible. Its funding model has been approved at the federal level and its coordinated through the Medicaid system. This means that any state that desires to create such a model can do so.

Read full article here

A Growing Burden on Caregivers: Natural Supports

Natural supports are typically free caregiving provide by a disabled person’s immediate family, and sometimes extended family and friends.

According to NASDDDS, close to 60 percent of people with intellectual/developmental disabilities (I/DD) receiving services live in their families’ home (National Residential Information Systems Project RISP 2010) which means that families are primary support for the majority of people enrolled in services. This percentage of people getting supports in their home has been growing as states look for alternatives to 24-hour residential arrangements.

In this difficult economy, it is quite tempting for policymakers to support and expand free natural supports, with urging by advocates who leverage this temptation and oversell the virtues of natural supports while also seeking closure of specialized residential (large and small), supported employment, and other services. “Supporting families is the pathway to a sustainable system and a sustainable future” (Nancy Thaler, Executive Director, NASDDDS).

Read more.

Related Research: Disability Caregiving Can Be Health Hazard, Study Finds (December 2012)

Emerging Threat: Use of the Supports Intensity Scale Assessment Tool for ICF/MR Discharge

The Supports Intensity Scale (SIS) is a needs assessment tool developed and sold by the American Association on Intellectual and Developmental Disabilities(AAIDD). SIS is designed to evaluate the practical support requirements of a person with an intellectual disability.

To date, SIS has been used most predominantly in the assessment of individuals served in non-ICF/MR settings. It is sometimes used in combination with other assessment tools, such as psychological assessments, and risk assessments to assist individuals receiving services and their support teams in developing person-centered plans that focus on strengths and abilities. Where used in ICFs/MR, an “add on” to the SIS assessment has been necessary.

Reports of the use (or proposed use) of SIS as an assessment tool for the purpose of re-assessment or discharge assessment in several states, including Louisiana, Kentucky, Tennessee, Virginia, and California is of significant concern. In Louisiana, the most dramatic example to date, every public ICF/MR resident was re-assessed with 20% of current residents being found ineligible for public ICF/MR placement regardless of how long they had called the ICF/MR home.

According to the Centers for Medicare & Medicaid Services (CMS), SIS does not meet the federal ICF/MR regulation standard for Active Treatment, which includes a requirement that each ICF/MR resident receive an “individual program plan” (IPP).

Read More

Read Kentucky Success Letter

Resource Links for Families and Advocates

Contact Information:

    *If a listed organization does not have a website, please contact VOR at This email address is being protected from spambots. You need JavaScript enabled to view it. or 877-399-4867 for contact information.

Links - In alphabetical order: