Speaking out for People with
 Intellectual and Developmental Disabilities

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:

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.  

Kentucky's Postsecondary Inclusion Partnership

If you thought college was out of the question, think again. Postsecondary Inclusion Partnership (PIP) supports qualified students with developmental disabilities to acheive their higher education goals. Check out the PIP brochure or contact This email address is being protected from spambots. You need JavaScript enabled to view it.at 859-977-4050 ext. 243 for more information.

The Importance of Guardianship

Disclaimer: The following is a great overview of the “frequently asked questions” about guardianship. It was written with Texas guardianship laws in mind, however, much of it generally applicable to any state. You are encouraged to seek the assistance of an attorney in your state when pursuing guardianship.

The Importance of Guardianship

Parent Association for the Retarded of Texas (PART) Newsletter
“No better ADVOCATE than the parent or family”
June 2010

Once a person turns 18, his/her parents are no longer considered the natural guardian.  This is true even if the individual has a disability such as mental retardation.  Parents no longer have the legal authority to make decisions for the adult with a disability unless they are appointed their child's guardian by a judge.  This means that the law presumes that the person with a disability can make all of his/her own decisions.

What is Guardianship?

Guardianship is a legal process whereby someone is given the authority by the court to make decisions regarding major life decisions such as medical care, living arrangements, and sometimes financial management and act on behalf of a person who lacks the ability to comprehend and do those things for him/herself.  The process is designed to protect an individual who cannot make decisions for himself/herself from being exploited, abused or neglected.

The Microboard Alternative

 

It is difficult to believe that a father with a 28-year record of active advocacy for the choice of facility-Bridgetbased care and adamant objection to community placement for his daughter with profound/severe intellectual disabilities would voluntarily remove his daughter with cerebral palsy from a state run facility where he was president of the parents’ association and place her in a community home.

Yet, Bill Haas, the former chair of VOR’s State Coordinator Committee and principal author of the VOR manual detailing how to effectively challenge forced community placement has in fact done just that.

The desire to find a permanent alternative to a state run facility that would permit his family to direct and control his daughter's care brought Bill Haas to consider the Microboard program. Like many community homes for people with mental retardation or developmental disabilities, the Microboard is paid with Medicaid dollars.

To read more about the Microboard model and how it is working for his daughter, Bridget, click here.