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)

Resource Links for Families and Advocates

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

Links - In alphabetical order:

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).

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Read Kentucky Success Letter

ICFs as Inclusive Communities

For the family members, friends and guardians of ICF residents, the consistent provision of highly specialized supports – assured by annual federal oversight surveys – is the highest priority.  Beyond care, however, these residents also have a life. They are integral members of their communities – both on campus and off.

Read VOR's "Intermediate Care Facilities (ICFs/MR): Inclusive Communities and Good Neighbors" (January 2011)

See also, VOR's comments to the Centers for Medicare and Medicaid Services which, in part, address defining “Home and Community-Based Services" [see VOR comments here (p.  5, Defining Home and Community Based Services)].

Community Services Checklist

VOR supports individual and family choice. For some individuals, an ICF/MR setting best serves that person's specialized and intense needs. For others, a community setting is desired and more appropriate. 

Individuals and families who are considering a transition to community placement must be educated about all community-based options. Any transition should occur only with the approval of the family and guardian, and only after a period of intense scrutiny of available community options.

Families and guardians have many things to consider when evaluating competing choices. Every person viewing a program sees different areas of importance and priority that determine whether that program and provider are acceptable or unacceptable. It is a very personal choice.

To aid in that process, a “Community Check List” document has been prepared that contains many questions to ask of potential providers, and things to look for.

Credits: The Community Check List was first developed by Polly Spare, the past President of VOR. PROOF, a VOR affiliate in Kentucky, with the help of Anne Montgomery and the Council on Mental Retardation (Section 6), provided updates.  

Community Resource Centers

Across the country, individuals with developmental disabilities who reside at home or in community-based services face long waits for needed services, such as health care, dental care, OT/PT, and even wheel chair adjustments. Many of these people with mental retardation or developmental disabilities simply go without. 

It doesn't have to be that way.

VOR supports the expansion of specialty out-patient clinics situated at existing licensed residential facilities - Community Resource Centers. The facilities already provide highly professional, specialized care to their residents. Rather than reinvent the wheel, VOR has promoted using the existing services and infrastructure to bring these services to nonresident neighbors of the facility.

It is more than pipe dream. It is a proven model. The following are some examples of community resource centers that have helped people with mental retardation or developmental disabilities.

• Northern Virginia Training Center's Regional Community Support Center, Fairfax, VA
• Regional Evaluation and Assessment for Community Habilitation (REACH) Clinic, Hogan Regional Center, Hathorne, MA
• University of Louisville School of Dentistry / Hazelwood Center’s Developmental Dentistry Program,  Louisville, KY
• Hazelwood Campus / Medical Clinic and Homes, Louisville, KY
• Robert Wood Johnson Medical School, Department of Medicine’s Developmental Medicine Program, New Brunswick, NJ
• Fircrest Residential Habilitation Center, Shoreline, WA
• Tachachale Dental Clinic, Gainesville, FL
• Higginsville Habilitation Center, Higginsville, MO