Archive of ‘Advocacy’ category
I am the parent of a child with a disability. She has a lot of medical needs too.
Kids who have a lot of medical needs can have a nurse in their home. MassHealth approves this service.
Parents have a hard time finding nurses. There are not enough nurses working in homes.
Nurses who work in homes make a lot less money than nurses in the hospital. This is a big problem.
The campaign started in April 2016 to help parents find nurses at home.
Nurses at home keep kids:
- Out of the hospital
- Attending school
- Being in the community
If you want to learn more, email firstname.lastname@example.org.
Why is advocacy important?
Photographer: Joe Gratz
We vote our elected officials into office to write our laws. But many people feel too nervous to approach their politicians. They may feel like they won’t be listened to or that they don’t have anything important to say. This is not true!If something is important to you, it is probably important to many others as well. Everyone’s voice should be heard.
But I don’t have the time!
As a mother of children with special needs, I know how hard it is to find time to get involved. Leaders want to hear the personal stories behind the numbers.They want to see pictures of people impacted by laws. If you are reading this blog, you can email your legislator your story and become part of a change for the better.
Where do I start?
If you don’t know who your state legislators are, then a great place to start is the Massachusetts State Legislature website. On the web site, there is a text box in the upper right hand corner. It asks you for your zip code. You type in your zip code and the web site will bring up information for your legislators. From there, you can choose to call, email or write your legislators depending on how much time you have and what your comfort level is. What is important is that you communicate your needs, thoughts and concerns with lawmakers. Your voice and your ideas could be what changes people’s lives for the better. You can be the change for the better.
For more information, you can also visit:
What is it?
Person-centered planning is a tool that can help you move forward with your dreams. It is about what you want to be doing in your life. It is also about what is most important to you. Imagine a meeting in which everyone is talking about what you are good at doing. Wouldn’t that be fun!
How is it done?
There are many ways to do person-centered planning. The first part is identifying what your goals are for the future. For example, you may want to live on your own, get married, and have a job you enjoy. Another important part is inviting people in your life to be part of the planning. You may want to invite friends or family members; such as parents, cousins, grandparents etc. You also might invite neighbors or people from groups you are part of, such as church or other clubs. This is like having your own team. The people on your team will support you. For example, your neighbor may be in the type of work you want to do. This neighbor may help you meet people at their workplace.
Here are some commonly used tools to carry out person-centered planning:
- Whole Life Planning
- Personal Futures Planning.
Why is it important?
It is important because all planning about your life should be led by you! You know best what you want to be doing. It helps to have a team of people who care about you. It is a great tool that has helped many people identify what they want to be doing and how to do it.
For information please visit: Bethmount.org
Many meetings about disabled people do not include them. Disabled people have been left out of many talks and decisions. They can be about little things, like their daily lives. They can be about big things, like national rules about disabled people.
In the 1990s, however, an old term was translated into English. It quickly became the motto of the worldwide disability rights movement. In five words, it says exactly what disabled people want and how they want it.
“Nothing About Us Without Us”
In other words: do not talk about us without including us.
Do not make laws about us without asking what we think. Do not say something is wheelchair-accessible without talking to wheelchair users. Do not talk above us at meetings. Do not have panels of experts on autism without an autistic person. Do not make clothes for people with cerebral palsy without having people with cerebral palsy test them. Do not write books about blindness without blind people.
For most of history, disabled people have been seen as less than non-disabled people. People were locked up in places called institutions. They were often little better or a lot worse than jails. Many non-disabled people think disabled people need to be taken care of. They think disabled people cannot take charge, and make changes in their lives, or in the lives of other disabled people.
We disabled people know that is simply not true. We have a lot to say. To get our points across, we talk with:
- sign language
- speech devices
- writing, and more
Today, the slogan “Nothing About Us Without Us” is the title to a popular book by James Charlton. It is about how disabled people are running their own lives. It’s about how they are changing the world. It is also the slogan of groups like the Autistic Self Advocacy Network. It was the theme of the United Nations International Day of the Disabled Person in 2003. It has even moved beyond the disability world. It has been used by other groups who are not treated well by others.
“Nothing About Us without Us” is a simple phrase. Yet it is very important. It tells everyone that disabled people want our voices to be heard. We want our thoughts to matter, because they do.
If you’re an active social media user and a disability advocate, you may have noticed a rainbow adorned wheel chair logo in your news feed. If you haven’t, the organization behind that logo is something you should know about. Founded by Kristen Guin, Queerability seeks to extend the voice of individuals with disabilities who identify as LGBTQ. Broadening the visibility of this community demonstrates its validity within the global mainstream and dismantles harmful misconceptions.
Queerability currently has a presence on Facebook, Twitter and Tumblr, but it doesn’t stop there. The organization has recently announced its plans to achieve non-profit status. The founder of Queerability, Kristen Guin, explained that the journey to this point wasn’t easy. “It took me a couple of months to decide to start Queerability” said Guin during an interview on Monday. Her reluctance stemmed from her belief that she wasn’t qualified. “At the time, I didn’t know much about other disabilities aside autism, and I didn’t feel educated about other LGBTQ issues” Guin said. My talk with Guin, who identifies as autistic and bisexual, revealed that she possesses the characteristics to become a preeminent leader. Her humility, humor, dedication, and intellectual prowess demonstrate that not all ‘Millennials’ fit popular stereotypes. In addition to running Queerability, Guin attends Western Kentucky University where she studies Business Management.
Amongst the recent accomplishments of the organization that, according to Guin, “seeks to increase the visibility of LGBTQ people with disabilities by honoring the intersection and parallels of the LGBTQ and disability experience” include influencing the actions of President Obama. Queerability co-signed a letter with the Autistic Self Advocacy Network to the president and Labor Secretary Tom Perez urging them to include workers with disabilities in the executive order to raise minimum wage. The president listened. View an electronic copy of the letter.
Hostess Twinkies Yellow Cake with Cream Filling
We were in the junk food aisle. I was not happy about this. The fruit aisle had been a total bust, as had been the cereal aisle.
With her hand hovering over a package of Twinkies, my sister Amelia turned to me and gave me a very grumpy look.
A woman pushing her shopping cart by us in the cramped Stop & Shop aisle scurried away, sensing an argument in the air.
As an adamant advocate for self-determination for people with intellectual disabilities, I was struggling with my sister’s food of choice for breakfast, debating where to draw my line in the sand – or whether I should do so at all. I chose the fruit route – and made a plea for cantaloupe.
“But I do not want cantaloupe, I want Twinkies!” she declared, pointer finger straight up, “they taste good with milk and tea.”
“But, Twinkies,” I stammered, “that’s – that’s just not breakfast food!” My counter argument came out as my hand went on my hip.
“It’s my human right and you can’t stop me,” she said loudly, her back stiffening. I recalled that Amelia was a regular attendee at her group home’s human rights meeting, in which people role played standing up for their human rights in decision-making at all levels – from self-defense to food choice.
“On the one hand,” I thought, “this human rights training is totally right on, but on the other hand, how could they let a person with pre-diabetes eat Twinkies, of all things, for breakfast?”
Agitated, my voice now met hers in decibel. “It’s my house, and my wallet, and we don’t eat Twinkies for breakfast at my house!” I stammered, attempting to impersonate a parent, now that our parents were dead.
The parental tone did nothing to further our détente. Her voice even louder now, Amelia became more adamant “They let me eat it at MY house. I went to MY human rights advocate. I eat one for breakfast with tea and milk. It is what I eat for breakfast. I WANT it for breakfast.”
This seemingly simple incident in the grocery store is actually about the foundation of modern disability policy writ small and large – the implementation of the “dignity of risk.” Coined during the de-institutionalization era by disability studies scholar Robert Perske at first used this phrase to challenge disability system workers about:
“…going overboard in their effort to protect, comfort, keep safe, take care and watch…this overprotection can…consequently prevent the retarded individual from experiencing risk that is essential for normal growth and development.” (Perske, 1972: 24)
By reflecting on the potential gain from experiencing day-to-day risk, Perske championed the need for people with intellectual disabilities to be able to take such chances as well. While I am doubtful that Perske thought much about Twinkies for breakfast, he did comment on the need for ‘prudent’ risk taking, stating:
“Knowing which chances are prudent and which are not—this is a new skill that needs to be acquired…Now we must work equally hard to help find the proper amount of risk these people have the right to take. We have learned that there can be healthy development in risk-taking and there can be crippling indignity in safety!” (Perske, 1972:24).
Perske’s commentary has informed the disability service community to think deeply about how to best support people with intellectual disabilities living and working in the community. And yet, I wonder, have we really had the conversations we need to have as service providers and advocates about the nitty gritty of the implementation of the dignity of risk – say – when it comes to Twinkies?
“Well,” I thought, “here I am, on the front line of implementing this important principle via arguing with my sister about the merits of a healthy breakfast versus the demerits of Twinkies. “Somehow,” the cynical me thought, “we’ve taken a wrong turn on this human rights stuff.” The disability rights movement supporter in me nearly passed out at this thought.
Taking a deep breath – and a new tack – I posed this question to Amelia. “OK, I understand and agree that it is your right to choose Twinkies, but will you at least ALSO have some fruit, and think about how Twinkies impact those sugar levels the doctor warned you about last week, you know, because of how you’ve been feeling sick sometimes?” As her sister and pseudo parent-figure, I felt compelled to lecture, and yet I also felt like a hypocrite, failing in my chance to effectively implement of the dignity of risk.
I was met with silence as Amelia defiantly placed three packages of Twinkies in the shopping cart. So, as many parents have likely done, I bought the Twinkies in order to avoid a scene in the grocery store. And, needless to say, Amelia had her Twinkies for breakfast the next morning, with tea and milk – and did give a bowl of cantaloupe a try.
While Amelia has since moved on from Twinkies to Count Chocula’s best, we do continue our discussion of her “sugar problem” and the importance of healthy choices, but the process is slow. I am often stumped about how to support an adult with an intellectual disability on making choices, as I believe a balance must be struck between supporting self-determination that incorporates the ‘dignity of risk’ with the need to support a person’s health “security.” Or, maybe that’s just an overprotective sister talking.
So, when I find myself struggling with Amelia over such issues as Twinkies – and more recently dating, sexuality and contraception – I look back to Perske to guide me. Recently, in looking over his seminal writing on the topic, Perske also addressed the disability service community, asking them to look within:
“Overprotection can keep people from becoming all they could become. Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try.” (Perske, 1972:24)
And in reading this passage, I was able to step outside of myself. I look back at myself and see that it has taken me too long to realize that much of the learning that needs to be done is learning on MY end. While my health-focused conversations with Amelia go on, I have learned to back off and respect my sister in ways I never thought I could. And in turn, Amelia has, on occasion, surprised me in asking for melon for breakfast.
Perske, R. 1972. “The dignity of risk and the mentally retarded.” Mental Retardation 10:24-27.
Note: The name “Amelia” is a pseudonym and is used to protect the privacy of the author’s sister
Dr. Elspeth Slayter is a Fellow in the Advanced Leadership in Neurodevelopmental Disabilities Program at the Eunice Kennedy Shriver Center of the University of Massachusetts Medical School. Dr. Slayter is also an Associate Professor of Social Work at Salem State University in Salem, Massachusetts.
Tracy Thresher lives and works in Vermont as an advocate for people with disabilities. He has written:
“As a child, I struggled with no reliable way to communicate. I now live out my dream of traveling to other states to educate others on movement and communication differences. Primarily, I advocate to promote the Presumption of Competence. “ (Blog Post, October 30, 2012)
This week we are pleased to share the transcript of an interview with Tracy that was recently published in Autism Around the Globe .
I am Tracy Thresher from Barre, Vermont. I now live part of my childhood dream thanks to the support of facilitated communication. Master trainer, Harvey Lavoy, has been my primo facilitator since the early 90s. Harvey, master trainer Pascal Cheng and my pal, Larry Bissonnette, and I have presented to educate others for many moons. Since the release of “Wretches & Jabberers”, Gerry Wurzburg’s documentary about our lives and work, our travel calendar has been wonderfully and fantastically full of opportunities to promote the presumption of competence. Please read
my blog to follow along on my journey.
Below is a transcript from my interview with the NLM Family Foundation featured in a video montage created by the Foundation titled, “In Their Own Words: Living with Autism in Adulthood.” I have had mind blowing professional growth thanks to communication. Communication opens the door to opportunity.
What are your hopes and aspirations for creating the adult life you desire?
My hopes are like a beautiful tapestry which I need to find the perfect combination of support to make into my own magic carpet. My wish is to create the life I see in my head on the mountaintop of my Green Mountains. To be true to the Tracy on the inside, I need to have people in the mindset of peaceful open-mindedness.
It is my desire to be independent to the best of my ability. I communicate more slowly than I wish to in this high-paced world but my thoughts are very quick. The touch of my facilitator must be one of peaceful calm. To build my dream of becoming an educator I pushed through many barriers of built up walls of enclosing people in institutions or encasing them in the trap of no outlet for their inner thoughts. It is more harmful to my soul to be in this stubborn body than I can type. To hope is to have faith in a future that includes professional growth and not the antiquated roles of paper shredding or stocking shelves but being respected for the knowledge this life has taught me.
My priority is to own or rent my own home or place with a good supportive roommate who is willing to be open to going through intensive training to get to see how my spirit relaxes with communication. I am not the person I appear to be upon a passing glance. To get to be the man I aspire to be is a lifelong journey. It is my vision quest to find more peace in my life. I think having my own home is the next step on my ladder of communication, as it is what I must have to be free of the encumbrances of others.
What are the specific challenges that you believe you face or will face in your adult life (housing, companions who assist you, living in communities, relationships, employment, education, etc.)?
As I mentioned, my priority is housing or more difficult to find is a companion to be my assistant in the life of becoming more independent. The hardest part is envisioning what I need but being unable to find the perfect combination of nice and firm communication partner. The world moves quickly and I need open-minded people who slow down to listen to my typing.
To live in the friendly Central Vermont community is a blessing. We have educated many people in our community by joining forces in schools. We have also spoken to legislators to let them see our intelligence. Our social fabric is beautifully sprinkled with an eclectic mix of abilities. There is more to be done and my fellow self-advocates and our supporters are tirelessly trudging up the trail to higher thinking. Through my work I have met many wonderful people who enrich my life and feed my soul to the point I dreamt of as a lonely boy.
My family loved me to the max; however, life in school absolutely traumatized me. It became unbearable to be thought of as a child who could not be educated. Now I mentor students. It is my mission to inspire children and show neurotypical kids how to slow down to listen to typing. More importantly, how to be a friend is what kids need to learn. I am thinking friendship is the way to open pathways to learning. On the mountaintop of success people need to have a hand to pull each other up.
On the top of my bucket list is to continue to learn and teach. I graduated from the school of hard knocks; now I try to prevent other children from living through the pain of a life of misunderstanding. I have friends who have made me proud by pursuing higher formal education. I would say my education continues through my work on the circuit of presenting to schools and communities. My employment is one of typing to educate. Working on presentations is on my mind constantly. I write it on my brain, and then I need my facilitator to be at my side to push the words out. To come from a menial job to a professional career is my proudest moment.
What types of programs or services would enable you to achieve the adult life that you envision and/or desire?
It is my desire to, of course, be as independent as my abilities allow. I want the same for all people. The Vermont legislature is better at listening to my typing than most other states. I understand politics and the need to divide services as fairly as possible. Ideally, I would like my services to include funding that is more reflective of the housing costs necessary to put me on the path to independence. The primary obstacle in my experience though is training of facilitators.
Harvey Lavoy, Pascal Cheng, Larry Bissonnette and I work hard to cover the state of Vermont on our shoestring budget but it is tough to get to everyone we would like to. For Harvey, it is a juggling of priorities that need to be addressed. My mission in life is to have the home of peaceful independence to communicate in daily life across environments. More than anything, I want to create a world of communication for all, to have our voices heard loudly from the hills.
Self-Advocate, Activist, and Documentary Film Star
There are many trainings for people with disabilities both in state and around the country. The following include those recommended through discussions with self advocacy groups around the state.
Trainings in Massachusetts
Self Advocacy Leadership Series / Massachusetts Developmental Disabilities Council
Contact Sandy Houghton at 617-770-7676
Offers a ten week self-advocacy leadership program that provides education, training and support to people with developmental disabilities.
Assistive Technology Workshops / Easter Seals
Contact Jeff McAuslin at 774-641-6340,
Easter Seals assistive technology staff share their expertise through informative workshops, course offerings, iPad and product spotlights.
Healthy Sexuality / Relationship Training / DDS Central/West Region
Contact Pat Carney at 413-5083,
Offers sexuality training for people with intellectual/developmental disabilities in agencies, school systems and on an individual basis.
Mass Advocates Standing Strong (MASS)
To schedule a training session contact: 617-624-7549, email@example.com
Offerings include “How to start a self advocacy group”; “Awareness and Action”, an abuse awareness and action program; and “Explore, Prepare, Act”, an employment training.
Training Resources in other states include curriculum, higher education, webinars and conferences.
Self Advocates Becoming Empowered, SABE
P.O. Box 30142
Kansas City, MO 64112
SABE is the self advocacy organization for the United States and their website includes resources for conferences, webinars and publications.
UNH Institute on Disability
10 West Edge Drive
Durham, NH 03824
This comprehensive website offers extensive resources, curriculum, workshops and webinars.
The Pennsylvania Training Partnership for People with Disabilities and their Families
1755 N 13th Street
Philadelphia, PA 19122
Contact Carol Csaniz at 1-866-865-6170 or TTY: 1-215-204-1356
The Partnership provides state-wide training, technical assistance, mentoring and leadership development by and for people with disabilities.
This week we introduce Nora McShane who is returning as a guest blogger to share her experience as a trainer. Nora has lived independently for the last six years and became involved with her self advocacy group several years ago. She is currently the president of the S.A.F.E. group at Minute Man Arc in Concord and a member of their Board of Directors.
Becoming a trainer
Recently, I was asked by my mentor, Sue Crossley, to present a training about proper nutrition at an advocacy meeting in Worcester. At first I felt a little anxious but I was also excited at the opportunity.
I was encouraged to give my own presentation entitled “Making Healthier Food Choices” as well as a separate training using an iPad. Sue came to my apartment and gave me training on how to use the iPad. The training made me feel more confident because I had learned a new skill.
When I got to the Worcester meeting I felt really excited. I was so honored to be able to teach my peers about nutrition and living a healthier lifestyle. There were around a dozen people from H.M.E.A. who were willing to hear me speak and be their trainer. Everyone watched and listened while I presented my own food plate demonstration. Everyone seemed eager to learn and ask questions.
After the training I felt very positive about my performance and I felt like I had accomplished a goal. I made positive strides toward being a more confident public speaker.
I’m glad I was asked to participate; it’s good to feel like I’ve been helpful. It feels good to share my knowledge with others.
Join us next week to hear about additional trainings being offered throughout the state by and for people with disabilities.