|
Maite Found The Arc, and Herself
By Patricia McNiff, Development Assistant, The Arc of King County
From left to right: Ashley Van Oeveren, Maite Ibarra, Catalina Angel
The Independent Living Ralley, Olympia, WA
Photo courtesy of Verónica Guzmán
Finding The Arc of King County Parent to Parent program was, for Mayte Ibarra, more than finding a support group, it was discovering a life for her son, herself, and her family. She was finally among people who understood.
Prior to the birth of her second son, Ulric, Mayte and her young family were living the American dream. She had immigrated to America from Mexico, she had a son, Andrew, whom she doted on, a loving husband, and she was excited with anticipation of another child.
The life she knew and enjoyed quickly began to unravel following the birth of her son, Ulric. The joy she felt as she welcomed Ulric into her life was all too brief. That feeling was soon replaced by worry and fear. Her first indication that something wasn't "normal" was from the considerable attention Ulric received by the medical staff. This attention was soon transferred to the attention of Mayte, which became all consuming. Of course unsought by Ulric, this disparity did not go unnoticed by her young son, Andrew. Her family
dynamic was now changed, and it wasn't a smooth transition. In fact,
the need for a transition had not been foreseen.
Doctors began to suggest a possible diagnosis of an Autism Spectrum Disorder for Ulric. Mayte's husband refused this notion, as he was not yet ready to hear this, so he resisted the diagnosis. Her son, Andrew, was also becoming increasingly unhappy in the new family dynamic that he found himself in. Simply put, Mayte was struggling. Everybody she turned to for help and advice, including her extended family, did not understand, could not understand. Mayte believed that she was alone. Her feeling of helplessness was becoming overwhelming. She felt guilt for her tears. She was afraid for the future of her son, Ulric, and for her family.
Medical offices were now commonplace for Mayte and Ulric. At one such appointment, it was suggested to her by a social worker that she contact The Arc of King County's Parent to Parent program. Mayte did so, and with some apprehension, she attended a Parent to Parent group meeting for Spanish Speaking Families. She came alone because her family was still not in agreement that Ulric had a developmental disability.
At the meeting, Mayte observed her surroundings. She noticed that Ulric no longer looked different among the other children. She was amazed by this, and by the feeling of acceptance and understanding that she received from the other families, and by The Arc of King County staff. Mayte, for the first time, did not feel judgment upon herself or her son. She had finally found a place where they both were welcomed.
Mayte became a fixture at these meetings. She was invited to attend the Independent Living Day Rally as a part of The Arc of King County's Advocacy Day efforts in Olympia. Curious about the idea of advocacy, she agreed to join. She was rather skeptical, however, of the effectiveness of such an advocacy effort, keeping in mind the workings of the government in her native country of Mexico.
In Olympia, Mayte arrived at the steps of the capitol building, where the rally was being held. Gathered there in a downpour of rain, and most without umbrellas, stood advocates of all ages, disabilities and ethnicities. Mayte stood wide eyed, as she witnessed examples of independence, strength, and hope from the advocates; she heard the laughter of camaraderie. Most surprising of all, she saw that many of the advocates were people who also had a developmental disability. What she noticed to be absent was sadness, pity, and a sense of loss; and she didn't hear the question, "Why me?".
For the first time, Mayte envisioned a dynamic life for her son, Ulric, which she had not previously imagined. She was impressed by the way the advocates spoke on behalf of themselves, and for others; and more, that they were actually being heard by their government representatives. Mayte, herself, met with her representative and voiced her concerns. She marveled at the fact that she was actively participating in this process of advocacy. Mayte had discovered a new role for herself. She was an advocate, on behalf of her son, herself, her family, and for countless others.
The Parent to Parent program at The Arc of King County was a place where Mayte found strength for herself, hope for her son and her family's future, and friendships. She learned how to celebrate differences, and the abilities of Ulric. She had finally found herself.
Mayte knows that struggles will remain a constant in her life. Every day begins the same way with a shared special moment between Mayte and Ulric. With tears of pride in her eyes, Mayte says, "nothing is better than Ulric's smile in the morning."
The 2010 Legislative Session - Grueling and Terrific
By, Margaret-Lee Thompson, Coordinator, King County Parent Coalition for Developmental Disabilities
The 2010 session was powered by the budget difficulties our state is experiencing. It was the most difficult session that I have witnessed in my 21 years of frequenting Olympia. Before the session began in January, I was worried sick about the possible cuts to our services. But in the end, some very good things happened.
There are a number of very interesting bills that passed.
You can look up any bill by its number.
You can find a complete budget chart.
Budget items that your cuts or reductions.
- Medicaid Personal Care - some hours for special meal preparation and incontinence care were reduced if assistance was available from family or friends.
- Some residential vacancies are not yet to be filled.
- Some cuts to dental services funded by Medicaid.
- Central DDD office lost 11 staff.
Governor's vetoes.
- Small study to determine cost and savings if health insurance would cover diagnosis and treatment for children with autism.
- Some Parent to Parent funding and some self-advocacy funding in certain counties. (King County Parent to Parent is not affected.)
- Changes to proposal to assess all people living in D.D. institutions. Result is that people living in our institutions will be assessed with same tool as community residential clients use. An independent consultant will review data by December 2010 to see if there are funded options available in the community for those who want to move to community services.
Movement of programs to other departments.
- The Infant Toddler Early Intervention Program will move from DSHS to the new Department of Early Learning.
- The State D.D. Council will move to the Department of Health. This includes the D.D. Endowment Fund (D.D.LOT).
Terrific Budget Information
- No cuts to Medicaid state plan services, e.g. vision, hearing, therapies, podiatry.
- Restoration of 2009 Medicaid Personal Care cuts.
- Restoration of funding for 50 individuals using the Office of Public Guardianship.
- Residential services for 37 people needing Community Protection or aging out of Foster Care.
- No reduction to the Individual and Family Services program (Family Support funded by only state dollars). Some families on the waiting list have begun to be contacted by their case manager.
- Every high school student (age 21) who graduated in June 2009 and 2010 will receive employment services. Some will be funded by state dollars and some will be put on a Medicaid waiver. (We have never seen every graduate funded in 20 years. This means employment funding for about 300 students in King County!)
- Adults who were unable to move to a Medicaid waiver to fund their employment services will continue to receive services.
- No proposed reductions to county contracts.
- Funding for 100 families to receive Children's In-home Intensive Behavior Supports (CIIBS waiver) was restored! This program will lessen the number of children admitted to institutions.
As you can see, 2010 turned out with some great results!
There is much work to be done for the 2010 session. U.S. Congress is discussing whether to continue funding the enriched match to Medicaid services for the states. Without this match (FMAP) our state will have $480 million more deficit. Our state's budget deficit continues to grow. Of high importance is the fact that about 47% of the individuals who are clients of DDD have no paid services. The Governor and the Senate proposed to close one or two of our five institutions. Yes, there is much work to be done.
You can contact the Parent Coalition staff if you are interested in joining us in our advocacy work. Contact Betsy McAlister, 425-882-2010 or bmcalister@arcofkingcounty.org
Push America's Journey of Hope
Push America's Pi Kappa Phi's Journey of Hope Cycling team and The Arc of King County at Gasworks Park, Seattle
Push America's Journey of Hope cycling team met up with The Arc of King County at Gasworks Park to kick-off their journey across the United States on behalf of people with disabilities. The Pi Kappa Phi's Journey of Hope team, consisting of 22 cyclists and six crew members for the Seattle leg, were cheered on as they embarked on their 67 day cycling journey which will traverse 4,100 miles and finally commence in August in Washington D.C. Along the way, the team will be documenting their experiences in journal archives which will be posted online for all to read. Throughout their journey, the team will participate in friendship visits, where they will partake in various activities hosted by local community organizations that support people with disabilities. Collectively, the Journey of Hope teams, which departed from Seattle and San Francisco, along with the Gear Up Florida team, which departed from Miami, and the Build America Team, which departed from Cleveland, will travel over 12,000 miles. All teams will meet in Washington D.C., the final destination for all. Push America and Pi Kappa Phi have raised over $500,000 each year from their Journey of Hope.
The Arc's Continued Advocacy Efforts
2010 Disability Policy Seminar, Washington D.C.
Photos on left: Sylvia Fuerstengerg, Executive Director of The Arc of King County; Senator Maria Cantwel. Photo on right: Mike Raymond; Diana Stadden, Policy and Advocacy Coordinator of The Arc of Washington State; Betsy McAlister, Assistant Coordinator of King County Parent Coalition for Developmental Disabilities of The Arc of King County; Sylvia Fuertenberg, Executive Director of The Arc of King County; Kathy Watson
The Arc of King County joined more than 530 disability rights advocates from across the country at the 2010 Disability Policy Seminar as part of a grassroots network that brought together families, organizations, and public policy experts to participate in a conversation related to a gamut of federal issues that directly affect the lives of people with developmental disabilities and their families. Advocates also met with State Senators and Representatives to speak to the importance of crucial legislation and topics.
Topics discussed included, health care reform, employment, education, 2011 budget and appropriations, housing, direct support workers, and the modernization of disability terminology. A history of specific legislation and the actions taken by Congress were provided for certain bills, such as the Developmental Disabilities Assistance and Bill of Rights Act (D.D. Act), Achieving a Better Life Experience Act of 2009 (ABLE Act), and Autism Spectrum Disorder (ASD) relating to the Combating Autism Act of 2006 which is up for reauthorization in 2011.
Additional information, such as tips for writing to a member of Congress, and Congressional service reports on the federal budget process, may be found here.
SOAR Conference
Cathy Murahashi, Coordinator of The Arc of King County's Parent to Parent program, accompanied by Eric Matthes, The Arc of King County Outreach and Advocacy Specialist; Jeanette Lange, parent; and Stacia Irons, parent, presented a workshop, titled, "Everybody Belongs: Facilitating Friendships for Children with Disabilities in the Informal Times of School" at SOAR's Sixth Annual Putting the Pieces Together Networking and Professional Development Conference.
Stacia Irons, who participated in the SOAR workshop presentation, is also a graduate of the ACT Leadership program and is organizing an evening at The Arc of King County for the screening of the film, "Faces of Inclusion". You are invited to come view the film and to join the discourse of ideas and issues presented in the film. Come and share your thoughts on how we can continue to work together to build bridges for our children. The screening for "Faces of Inclusion" will be held on July 20th at 7:00 p.m. at The Arc of King County.
For more information, please contact Cathy Murahashi at 206-829-7039 Tuesday and Thursday, or 425-643-4048 Wednesday and Friday, or cmurahashi@arcofkingcounty.org
In Other News
A GREAT READ! Discover the beginnings of the grassroots movement advocating for the rights of people with developmental disabilities and their families: how the need for The Arc came to be.
Becoming Citizens: Family Life and the Politics of Disability, by Susan Schwartzenberg
Don't miss Susan Schwartzenberg's moving narrative that poignantly describes the journey of thirteen families from Seattle who refused to accept the leading expertise of the time, which told them their children with developmental disabilities belonged in an institution.
Accompany these families as they embark on their grassroots movement to defy conventional wisdom and fight for the rights of their children, and for all people with developmental disabilities.
Schwartzenberg, a photographer and visual artist, takes you through a journey of visual story telling, interviews, a history of Washington State politics and education in relation to people with disabilities, and the culmination of how present laws and education standards came to be. It is the story of ordinary citizens who found themselves in extraordinary circumstances. Discover how they earned their place in history in the name of the rights of those whom they love.
The fight for the rights of people with developmental disabilities and their families is not over. These families, who stood against all odds, serve as an inspiration to those, who today, continue to keep advocacy alive.
Discover Outdoors For All Foundation
Now that summer is finally here, get outdoors and enjoy the sun while you can! Outdoors for All Foundation offers a variety of year-round recreational activities, from snowboarding, to kayaking, to water skiing, for children and adults with disabilities. Many varieties of adaptive equipment are available for rent, such as recumbent trikes, side by side recumbent tandems, handcycles and more. So, take to the outdoors this summer and visit Outdoors for all Foundation. For more information call 206-838-6030. Financial aid is available to qualifying participants.
|
