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RIde the Wave/Freedom Marches Across the US/Region Reports
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RIde the Wave
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The 5th National Self-Advocacy Conference
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Providence, Rhode Island
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Advocates in Action, Rhode Island’s statewide self-advocacy organization
and PAL (Parents and Friends for Alternate Living), a statewide family advocacy
organization are hosting the August 31-September 3rd conference taking place
at the Rhode Island Convention Center. More than 1000 people will be in
attendance. Workshops during the conference will be presented by leaders
in both the national and international self-advocacy movements covering issues
such as voting, closing institutions, affordable housing, rights, respect
and dignity, competitive employment and inclusive education. Actor Chris
Burke will serve as keynote speaker. Burke, who has Down Syndrome, is best
known for his performance of Corky on Life Goes On; the entertainer will
also perform in concert with his band. According to Rolf Gjertsen, Rhode
Island Advocates in Action President, the goal of the conference is to promote
local, regional, and national support towards helping all people, with or
without a disability to become more understanding of one another. Gjertsen
hopes that the conference will create more public awareness of the needs
and desires of people with disabilities. One of the most important issues
facing us is to educate local, state, and national political leaders that
people with disabilities are quite capable of voting. We are very involved
in the political process. And our voice is getting stronger day by day. |
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SABE will be holding their own regional elections during the conference.
Vote for your regional representative if you attend the conference, and find
out who your elected represented is so that he or she can work for you and
your state!
Thank you Rhode Island for hosting the National Conference!
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Self-Advocacy Groups Rally Across the U.S. In The First Annual Freedom
Marches.
Alabama had a Freedom Rally on April 26 in Montgomery, AL with 250 people
attending. The rally theme was Open the Doors to the Community. Members talked
about living in the community, wanting jobs and homes. Two state Senators
spoke in support of community living. Our partners the DD Council, the Governor's
Office on Disability, the Dept. of MH/MR , the P&A program, and some
provider organizations were very helpful in assisting with money for meals,
transportation and attendant care stipends. Much coverage by TV, newspaper
and radio.
Connecticut held their Freedom Rally April 26. It was the worst weather all
week. Rain, 39 degrees. But the spirit was high, the songs beautiful and
the speeches were very touching, passionate and just unbelievably good. PF
members told about Southbury and living in the community, the IL Director
talked about growing up never dreaming she would live in a nursing home,
the MH Director and consumer talked about herself in hospitals, and so many
others. Rep. Thompson came and spoke to the group of 100 plus people who
braved the rain and the cold.
Georgia had a rally for self-determination in April.
Massachusetts The Boston rally began with a visit to legislators and the
governor's office sharing packets and ideas. The day was snowy with strong
wind. Sixty self advocates and supporters came from western region of MA
with around 12-15 from mostly the East region. With bullhorn in hand around
12 self advocates spoke with cheers and chants in between. Rob Cutler, national
president of the Autism National Committee spoke as well as Steve Bradley,
aide to Senate Minority Leader Rosenberg (Steve Bradley is the former west
region DMR Director who closed two of our institutions.) They visited the
House and Senate leadership, gov's office and reps and senators giving them
or their aides packets of information and explaining why they were there.
Minnesota had a Freedom March held on April 26 combining Closing the Doors
and Remembering with Dignity Committees.
Montana PF/Missoula, wrote a letter to Governor Marc Racicot in April and
sent a copy to key people in the state asking the Governor and others to
“free our brothers and sisters still living in institutions.
New Hampshire had a great day marching in front of the capitol April 18.
Two major newspapers from NH came and our NH TV station. About 30 people
gathered, five were from MA! Following the Freedom March, was the Senate
Hearing for a bill they introduced for "most integrated setting". We squeezed
into the room and gave testimony for how wrong it is to even think of opening
institutions again, and how we have friends in other states that have a bigger
battle of closing institutions. The Senate committee voted then and there
to pass the bill onto the full house.
New York had a terrific day at our Focus on Freedom. Fifty People (self-advocate
leaders, and our State OMRDD Commissioner ) gathered at a retreat center
and reflected on where we've been, where we are now and where we want to
go. We had some testimony about people's institutional experiences that was
really intense and laid the ground for our day together. One woman talked
about the "Scars that will never heal".
Ohio PF/OH hosted a Freedom March April 26 that had speakers talk about "Opening
Doors to the Community.” It was held at the statehouse. Groups working
with PF/OH are their 16 local chapters, The Arc/OH, the DD Council, and the
OH Dept. of MR/DD.
Pennsylvania had a Freedom March April 26 marching from the Hilton Harrisburg
and Towers to the State Capital in Harrisburg with 300 people attending.
Their rally was full of personal stories of what life had been for people
who had once lived in institutions and are now living in community-based
care in their homes of their own choosing. The rally was to encourage the
state government to extend community based plans to include all people with
disabilities.
Vermont They had a reunion for folks that lived in their institution that
has been closed since 1993. The reunion was in February and they had a rally
on March 14 at their state house. Large turnout - over 250 people marched.
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Region Reports
Cherie Tessier and Katchen Helwig of Region 1 representing Alaska,
Idaho, Montana, Oregon, Washington: Alaska is having monthly Board and Executive
meetings, and also computer classes twice a month. AK members are also having
a PF booth at Summer Solstice Activities for people from any agency to get
the public to know about them. They are also having a barbecue and advertising
about it to try to hopefully get more members. Oregon reports Close the Other
Doors - Open New Ones. They have closed Fairhaven State Institution the end
of December which is their last one. Washington state is still doing training
with Idaho. Cherie Tessier and Mike Rogers, PF/WA members, went to their
first local precinct, county, and state Democratic convention and both were
elected as delegates in the platform caucus that included People First language
in it. Cherie went to the Mobility International U.S.A. in CA in May. WA’s
P&A System just won a lawsuit against Western State Mental Hospital.
Communities in the state are coming together to work out something about
the Olmstead ruling in Washington state. June 12, 45 people attended a D.I.C.C.A.
meeting through DSHS Aging and Adult Services. Everybody’s main concerns
were funding, Medicaid Personal Care, Care Providers and Accessible and
Affordable housing. People First of Missoula, Montana (See Freedom March
report)
Teresa Moore and Joseph Buchroeder of Region 2 representing Hawaii,
California, Arizona, and Nevada. No Reports Submitted at Press Time
Beverly Stevens and Noel Rasband of Region 3 representing New Mexico,
Utah, Colorado and Wyoming: Wyoming - PF/WY’s conference was held on
June 2-4 with theme: “Who Is In Charge Of Your Life”. Keynote speaker
Karl Williams talked about Roland Johnson. PF/WY wrote a grant to OK and
they got it! They are planning a "Power to the People Retreat" in November
and will be working on a video called "What People First Really Means". They
will also discuss what successes or problems each PF chapter is having then
set up goals to work them out and to see what they need to work on in the
community. Colorado - June 10 Speaking for Ourselves had their state membership
meeting/conference. The workshops were "Living in the Community", “Your
Vote Counts", and “Relationships". The “Close the Doors committee
is working on a video about institutions. Many of the members have grown
up in institutions and they will be telling their stories. Utah - Arc/UT
is trying to help the self-advocates to get PF started. The Salt Lake/PF
had officers elections and are planning a picnic, set up a subcommittee to
plan their fund-raisers. Officers are going to be trained on planning agendas,
running meetings, and being strong self-advocates. They are now growing for
they have 22 members. Arc/UT is working on getting a list of self-advocates
who would be interested in starting PF or other types of self-advocates groups
in Cedar City. New Mexico - No Report
Joe Wrinkle and Mark Samis of Region 4 representing Kansas, Missouri,
Nebraska, North Dakota and South Dakota - No Reports Submitted at Press Time
Tia Nellis and Gloria Steinbring of Region 5 representing Minnesota,
Iowa, Illinois, Michigan, Indiana. Gloria Steinbring reports from Minnesota
that on April 26 a Freedom March was held combining Closing the Doors and
Remembering with Dignity Committees. They did “Common Vision” training
in Mohmone, Minnesota . They also laid a new head stone at Willimar MN for
those that died in the institution.
Elouise Woods and Edward Sewell of Region 6 representing Alabama,
Georgia, Mississippi, Tennessee, Kentucky, North Carolina, South Carolina,
and Florida. Alabama The Wyatt case was settled. PF members testified in
court in support of the settlement. Now 300 people will move out of institutions.
Tennessee is still working on getting people out of institutions. They had
regional meetings to elect a new board. They had a fundraiser. They worked
with PF of AL, TN, and GA to write a grant for funding from OK and they got
the grant. They will help other states in the region to learn about
self-determination and how to start self advocacy in their states. North
Carolina, Mississippi, Florida, South Carolina and Kentucky have identified
someone as contacts for SABE. They all were contacted by People First of
Alabama, Georgia and Tennessee to support the Grant to sponsor a Regional
meeting.
David Young of Region 7 representing West Virginia, Maryland and Virginia,
Pennsylvania, and New Jersey. People First of Northern Virginia has been
active in the community, participating in educating the community at a local
county fair, marching in a Memorial Day parade and being involved at the
state level. The state of Virginia’s Dept. of MH/MR and Substance Abuse
is working on a grant to bring self-determination to the state. PF/VA has
representation too. PF supported Project Leadership in Wash. D.C. At least
twenty self advocates will be going to RI for the national conference.
Mary Varney and Keira Williams of Region 8 representing Maine, New
Hampshire, Vermont, Massachusetts, Rhode Island, Connecticut and New York
SABE Region 8 had a meeting at Mt. Sunapee, New Hampshire, April 5/6 and
encourage other regions to have meetings with each other every year. In Vermont
level funding an issue - we were asking for more money to increase staff
salaries and fund services for people who are not getting them now. Advocates
and families met with Governor Dean. Maine Next conference will be October
19/20 at Sunday River in Bethel ME. The DD Council has asked self-advocates
to work on a three year project where self advocates can train service providers
and other interested parties on housing, person centered planning and other
related topics regarding people with developmental disabilities. New Hampshire
reviewed their current goals worked on during a one-day retreat. New goals
include hold annual conference which will focus on voting and the campaign,
leadership training, promote PF/NH using TV, radio, newspapers, develop new
groups, especially young adult groups (one started as a result of people
learning of their new web site), organize for Ride the Wave, increase access
to computers, do legislative advocacy. A bill they are working on is to "keep
the institution doors closed". Connecticut goals are to change the name,
more community housing, equal pay, close the Southbury Training School. There
was a Board Retreat held on May 16/17 to review current goals, plan future
goals and by-laws. At the Self-Advocate Forum in Hartford 60 people spoke.
Main issue is that transportation is a problem. People have been testifying
before the legislature, working on writing some grants, talk about learning
to use Web TV, training self-advocates and families about self-determination.
New York has a grant from the State to train service coordinators about how
self-advocates and others want to be supported--that the service coordinators
work for us and train self-advocates across the state about how to get the
most out of their service coordinators. Self-advocates are playing a key
role in all major state and regional committees related to self-determination
and the system change process in NY. The state is expanding opportunities
for self-determination through individual budgets in the summer or fall.
There are about 150 groups and about 3000 members in six regions of NY, some
have their own newsletter and TV shows. NY state board of 18 self-advocates
meets with legislators and state officials and develops position papers on
important issues like the state budget. Rhode Island is working on the National
Conference. They testified about the need for additional money at Budget
Hearings. They held a statewide meeting on how to vote and how to register
to vote, alternative means of communication to support people in different
ways, to tell your story, how to start your own business. They are talking
to college students, working on Disability Awareness, Telling Personal Stories
about living in institutions and the community and the changes in their lives.
Massachusetts - Main goal is to get DMR to change their name. Had focus group
with ARC and other providers, wrote letters to commissioner. MA has convinced
DMR to move to come up with new name. But a large group of parents are opposed
to name change. Civil Suit against DMR about people in nursing homes. On
Feb. 14 State House protest was organized by Peace Abbey. We talked to
Legislators and four folks were arrested. Attended DD Council Legislative
Day to try to increase funds for staff. Local Western MA Group sent 30 advocates
and staff.
James Meadours and Ronnie Meeker of Region 9 representing Arkansas,
Oklahoma, Texas, and Louisiana - Ronnie Meeker reports from AR that they
had their state conference. There they elected their new representatives.
Teresa spoke about taking care of people that work with us through insurance
coverage so they can keep their jobs they have working with us.
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