Speaking out for People with
 Intellectual and Developmental Disabilities

Grassroots Advocacy Checklist: If not us, who?

When dealt a "recipe for disaster", the following provides tips on how to "make cake" by sharing with advocates a checklist for successful grassroots advocacy.


The "Recipe for Disaster":

 ONE written state directive that requires planning teams to conclude that every facility resident is “eligible for community placement unless they represent a serious danger to others” (emphasis in the original).

• MARINATE the state directive for about 8 years. The result will be a finding that there are 2,400 facility residents who are appropriate for community placement (Caution: Do NOT add choice to this recipe).

• STIR in various initiatives including a P&A lawsuit and a state plan under “Olmstead” that continues the myth that there are 2,400 people “inappropriately institutionalized,” and a bill to close five of the state’s facilities for people with developmental disabilities.

• Add a DASH of budget woes and a call by the state DD Council to “take a lesson from neighboring states” and reduce or close our state facilities to save money.

Sound familiar?

 The “Recipe for Disaster” that I just outlined is from my own state, New Jersey. Yet, I know from reading the news from VOR and other sources that the budget crisis has lead to the all-too-familiar battle cry: Close Institutions, Save Money.

Advocates against choice in many states are seizing this opportunity to accomplish their “close facilities” agendas, and politicians eager to save a buck are all too eager to listen.

Newspaper headlines and editorials will often leave the average citizen with the impression that closing large facilities will not only save money, but is the right thing to do.

Make Cake: Grassroots advocacy checklist - “If not us, who?”

1. ORGANIZE a strong statewide organization or coalition of choice advocates, lead by the facility association presidents and leaders of other like-minded groups. Arrange to meet regularly, by teleconference, if necessary.

2. ONE MESSAGE, MANY VOICES: Use the Statewide Organization to distribute “Action Alerts” to choice advocates around the state. Alerts should contain short, simple template messages and contact information for elected officials. E-mail lists and “phone trees” are also very effective when a message has to get out quickly.

3. CHOICE NOTIFICATION FORMS: Counter the statistics sent around by anti-choice advocates. Poll your members. Send a postcard survey asking family members/guardians of ICFs/MR residents where their family members are best served, the ICFs/MR or community? Tally and publicize the results.

4. REACH THE MEDIA to educate the general public: Write letters to the editor. Contact Opinion Page Editors to inquire about submitting longer guest editorials (Op/Eds). VOR can help.

5. YOUR FAMILY MEMBER: Make sure your family member’s official planning documents (IPP, IHP) expressly detail her needs and desires, including the services that she now receives in her present home that must be replicated in an alternate setting before any transition from her home will be considered. Have on a file a list of approved visitors.

6. CONTACT VOR for a template “facility support position,” cost comparison resources (including a 2009 update), and other advocacy tools. 877-399-4VOR; http://www.vor.net; This email address is being protected from spambots. You need JavaScript enabled to view it..

Whether we are facing good times or the perfect storm, families must be proactive with regard to the needs of their loved ones with developmental disabilities.