VOR is a national advocacy organization representing individuals with intellectual and developmental disabilities and their families. Whether you are seeking services in a smaller setting or a licensed facility community, this site is dedicated to providing some background information to assist you on our journey, including information about licensed Medicaid facilities (ICFs/MR), Resource Links, Guardianship, Community Resource Centers, and more.

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Yellow Pages for Kids with Disabilities

Source: WrightsLaw

Yellow Pages for Kids with Disabilities allows you to search for services in your city, state or region by clicking on a map of the United States. 

 

Intermediate Care Facilities, Plus: Online Research Tool

FindTheBest is a free online research hub that equips people with information and research tools to access to information on hundreds of topics, including a listing of Intermediate Care Facilities for Persons With Intellectual and Developmental Disabilities with the ability to search by city, state or region. 

VOR shares this website as one of many resources and makes no guarantee as to the accuracy, adequacy, currency or completeness of the FindTheBest listing. 

 

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)

 

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.  

 

Resource Links for Families and Advocates

Contact Information:

    *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:

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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

 
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