Tag: disability

Keep Calm and Vote On

person filing in a ballotI was texting with my friend, who happens to have autism.  I asked her about the upcoming election for president. I asked, “Who are you going to vote for?”  She answered, “I already sent in my absentee ballot. The last time I went to vote, it was sensory hell.” She had a tough time at the polling place in her town.  She went on to tell me that the workers acted like she was stupid. She had trouble with the bright lights, noises and long lines.  She wasn’t sure what line to get in. She got nervous. When she gets nervous, she talks loud and doesn’t even know it.  Her story made me wonder if there was an easier way to vote if you have autism.

What is the law for polling place access for people with disabilities?

In 2002, the Feds signed the Help America Vote Act (HAVA)[1] .  Many voting places were tough to figure out if you had a disability.  Two mandates were decided on:

1.    Accessibility costs money.  So a grant program was created to give money to towns and cities so they could upgrade their polling places.

2.    Every polling place in the United States was to have at least one voting machine that was private.

Pretty simple.  But not so easy in reality.  How could someone with autism have a shot at voting in person?  A simple checklist could help.  And make sure you are registered to vote!  You can’t show up the day of the election.  You must register ahead of time.  Call your city or town hall for instructions.

Simple steps to make voting in person easier

1.    Plan your visit.  Call your town hall or city hall.  Ask if you can stop by the night before the election.  The voting booths should be set up. Find out the best time to vote.  Ask what time of day has the shortest lines.

2.    Ask about the private voting booth.  Where is it located? Does your polling place even have one?  If not, find a booth at the end of an aisle so you have some privacy.

3.    Pack a “sensory” kit – bring a koosh toy, gum, or stress ball. Wear ear plugs. Use whatever will work to reduce your stress.  If you get stuck in a long line, you’ll be glad you have something else to focus on.4.    Get the name of the person who can help you on voting day.  Can this person check you in?

5.    Bring a picture ID!  You may have to prove who you are.

6.    Get a sample ballot ahead of time, if you can.  Know who you are voting for before you show up. Know what issues are on the ballot.

7.    Know what to do after you vote.  Ask about where you turn in your ballot and where you check out.

8.    Bring a friend or family member.  He or she can help you if you get confused or feel like you are going to have a panic attack.

Keep calm and vote on!


Health, Choice, and Responsibility: Self Advocates Take Control of Their Lives

Guest Blogger, Pam GreenThis week I am pleased to introduce our guest blogger, Pam Green, Shared Living Placement Coordinator and Self Advocacy Advisor for Horace Mann Educational Associates (H.M.E.A).

During my college experience, I first majored in Communication Disorders and then switched to Sports Management. Curiously enough, the first 15 years out of college I managed a Health Club then owned my own fitness studio. In 1994, I started working for H.M.E.A., a wonderful company that supports individuals with developmental disabilities.

It is here where I first learned about self-advocacy and the importance of opportunity for all.

Self Advocates choose to learn

Leaders Educate Advocacy Delegate Empower Respect Support (L.E.A.D.E.R.S.) GroupTwo years ago, with the support of H.M.E.A. I was offered the role of co-advisor for a local chapter of Mass Advocates Standing Strong, (M.A.S.S.). It soon became apparent that this group was eager to learn, explore, and take control of their lives.

While researching topics and trainings for this group, I came across the curriculum for My Health, My Choice and My Responsibility, developed by the Westchester Institute for Human Development in collaboration with the Self-Advocacy Association of New York State. Topics include developing a health plan, self-advocating at the doctor’s office, physical activity, nutrition, safety and cleanliness in the home, hygiene, and emotional health. The program is designed to be used directly by users with special needs to learn about healthy living.

Bingo! Finally, 33 years since college, I found a way to make BOTH of my majors relevant in this one training!

App offers self directed learning

What’s really wonderful about this training is Able Link’s cognitively accessible self-directed learning App for iPads. With monies received from a grant, we were able to purchase two iPads for the self-advocates to use during our sessions. We also incorporated the opportunity for each self-advocate to co-train with an advisor, adding to their learning experience.

Each session has been a wonderful collaboration of personal experience and sharing among the self-advocates. They listen to each other. The teach each other. They want to learn more.

If we truly want to support individuals with developmental disabilities, we must continue to offer individuals the opportunity to learn.

“Leadership and learning are indispensable to each other”
John Fitzgerald Kennedy

Autism Insurance – One Family’s Story

UMass lit up blue

It’s Monday, April 2 and I’m waiting to deliver remarks at the “Light it Up Blue” celebration at UMass Medical School. A mom approaches me with her son and I ask him how he’s doing.

“Great” he replies with a big smile and, good eye contact. I ask him how old he is and he proudly holds up four fingers. And then he says, “When I am thirteen I want to be a teacher like Jean”, (his ABA therapist). Then his mother stepped up to me and quietly said, “I want you to know how grateful I am. You passed the autism insurance law a month before my son, (the future ABA therapist!), was diagnosed with autism. It has made such a difference in our lives”.

I reflected back to the signing of the insurance law at Fenway Park, when I said this victory was not just for the crowds assembled, but for the families who would be sitting in a doctor’s office the following day and the next. . . . receiving the diagnosis that had pierced through so many of the hearts and souls of the parents in the stands that day.

And here was that mom I’d spoken of, right in front of me, with her child who had benefited from the treatments we fought so hard for him to be able to access.

At the Autism Insurance Resource Center, the calls keep coming

In our first year, the Autism Insurance Resource Center, received over 600 calls. And as word gets around that we are there to help, the calls continue to increase.

They are people needing information; help in understanding the law; advice about dealing with insurance denials or problems with finding providers. On bad days, I feel like we should answer the phone “complaint central”. But frankly, we’re there for the problems. We help people access coverage. We help them navigate the system.

Insurance is complicated. Insurance for treatment like ABA, that’s never been covered, is even more complicated. It’s a lot of square pegs, round holes, and sometimes brick walls. But we work with people. If it’s a square peg, we try to round the edges. If it’s a brick wall, we look for a way around it.

We try to help. We think we do a good job. And when I meet a little boy who holds up four fingers and tells me he’s going to grow up to be a therapist, I know we do.

To learn more about resources for individuals on the spectrum, join us for next week’s blog. We have a lot of information we’d like to share.

Mentoring Program for Youth with Disabilities Makes a Difference

When you were growing up, who made you feel good about yourself?

For me, I think that person was my brother. Although he teased me ruthlessly when we were young, he was always there for me… And when he went off to college, his letters were a precious reminder that there was someone who thought I was extraordinary.

Mentoring Program addresses a need

Everyone needs someone to make them feel good about themselves, and for many youth, mentoring programs were established to offer that support.

In 1985, Regina Snowden established Partners for Youth with Disabilities Inc (PYD) to address this specific need. As a community based mentoring program, PYD now serves youth of all disabilities between the ages of 6-24 years old.

Addressing the whole child

Last month I met staff at PYD and was truly inspired by their passion and commitment to this mission. I began by meeting with Kaela Vronsky, Mentoring and National Center Director who gave an overview of their comprehensive programs.

“Our goal is to address the whole child and use our programs, including mentoring, to help facilitate a smooth transition to independent adulthood. PYD now includes our Access to Theater, Making Healthy Connections, and Young Entrepreneurs Programs. ”

Mentoring makes a difference.

Lynn and her mentee

Jeff Lafata, Mentor Match Specialist then shared his thoughts about why people ask for mentors. “For children, some have really bad self esteem and want help. For older youth with disabilities, many are getting ready for college or preparing for a job and want a mentor with a disability to let them know they too can be successful.”

He then spoke of a match where he was personally inspired. “We had a

Juan and his mentee
Juan and his mentee

mentee who was 22 and a wheelchair user. During the interview he was extremely dynamic talking about an internship he would be doing at a recording studio. But he could also be depressed and didn’t really identify with having a disability. We matched him with a mentor who was 30 years old, also a wheelchair user, married, and had his own business. By meeting him, he could see it was possible to be where he wanted to go.”

Think about being a mentor

 PYD presently has 65 active matches, with an additional 50 youth on the waiting list; 80% are male who prefer a male mentor. Statistically, that means for every adult male on the mentor waiting list there are 8 youth looking to be matched specifically with a male mentor.

So if you or someone you know is interested in being a mentor, especially your male friends, contact Jeff at jlafata@pyd.org

After visiting this wonderful organization, I assure you it will be worth the call.

What Does Accessible Mean to You?

As I began my Gopen Fellowship, I thought that describing what was accessible and what wasn’t would be simple. Just look at the architectural access code, right? Was I ever wrong.

The summer before my fellowship, I went on a family visit to an “unnamed to protect the innocent” cultural venue in Boston. Our family group included two children in strollers, one still in diapers, and an elderly relative with hearing loss, diabetic neuropathy and osteoarthritis.

We benefited from, and made use of, ramps, wide doorways, and accessible restroom stalls. But sometimes the needs of our group fell outside of the ADA Accessibility Guidelines, but still impacted our ability to enjoy the venue. We needed places to sit and rest, family restrooms and good lighting.

One size does not fit all

I realized that meaningful access is a lot more than compliance with access code and following regulations. I also realized that lack of access didn’t just affect people who identify themselves as a person with a disability.

Most elements in our environment are designed for an adult of average size without physical limitations. Those elements then need to be “adapted” for everyone else: children, people of differing heights, weights and abilities.

Universal Design

As I looked into this further, I began reading about “universal design.” It is defined as: “the design of products, environments, programs and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design.”

What a simple, elegant and revolutionary idea!

Access benefits everyone

When ramps and curb cuts were mandated by the Americans with Disabilities Act, many people perceived it to be a waste: a large expenditure to benefit a small number of people. Twenty years later, every parent with a stroller and every delivery person with a dolly takes them for granted. Closed captioning on television is used in noisy environments like bars and gyms all of the time.

Since one size does not fit all, it is important to “know before you go.” Finding out about accessibility is an interactive process: call, ask questions and send emails! A cultural venue is more likely to respond to an accessibility issue or need once they are made aware of it, so don’t be shy!

Nora Nagle
Nora Nagle, Guest Author

Hospice Program Embraces People with Disabilities

hand of an elderly person being held by a younger one

This week I introduce Nancy Ledoux, a chaplain for VNA Hospice Care in Woburn, MA.  Nancy brings over 12 years of experience providing support for people with disabilities choosing to die at home.

Hospice team addresses challenges

Nancy began the discussion by explaining some of the unique challenges faced.

“For a person with a disability, going home may be with their family but it also may be going to a group home. Either way, we are there for everyone. In the group homes we work with staff, housemates and the family when involved. We have a strong team including a primary nurse, social worker, home health aide and my role as chaplain.”

As we talked further, Nancy spoke of her collaborations with organizations that serve people with disabilities.

“Over the last 8 years, groups of area nurses from the Department of Developmental Services (DDS) started meeting with us to streamline the regulations, making hospice care easier to offer in group homes. As a result, more vendors are choosing to offer end of life care.”

Dying at home is a life experience for everyone

Supporting a person who chooses to die at home has an impact on everyone involved. Nancy shared her personal thoughts.

For people with disabilities, “Dying can be so bewildering, but choosing to die at home is universal. Giving the choice is human and humane.”

For staff, “When young or from a different culture they may find it unconscionable to let a person die with comfort measures only. But the social worker and I encourage them to talk and really listen. It is very heartening to see the change that occurs”.

For family, “If a family member is in a group home, they may want to camp out there. Staff and roommates can feel elbowed out, but with support they learn to respect and support each other. ”

And for the housemates, “They get it. In fact, they get it better than a lot of us do. We encourage them to sit with their friend, which many choose to do. By being there through the whole process they also get to see they will not be abandoned when their time comes”.

Hospice program embraces the entire community

This conversation with Nancy gave me hope.

At a time when we worry about budget cuts effecting services for people with disabilities, Nancy reminds us there are programs in our communities committed to offering their services to people with disabilities.

And as a result, even through one of the most difficult times in a person’s life, everyone wins.

Dying with Dignity: The Conversation Begins

two white roses on black background

If you think about dying with dignity, it can bring up a different image for each of us. For some it may be going to a hospice center or hospital with professionals providing comfort care. For others it may be having the choice to die at home surrounded by loved ones.

When a person with a disability chooses to die at home, it may be their family home or a community living arrangement. The people providing support could include family members as well as roommates, service coordinators and a staff of paid providers.

Imagine all the different opinions and personal issues that come up along the way.

As a result, we need to begin talking about death and dying, the different roles people play and how it affects everyone involved in the process.

Facing death together

Talking about death is not an easy thing to do, and when someone is dying, it can be even harder. The finality of it all is hard to accept not only for the person who is dying, but sometimes, even more difficult for those left behind.

A few years ago my own Mom died. In her situation we were given time to do some planning; to bring her home with hospice and to support her in the choices she made at the end.

I won’t pretend that it wasn’t difficult, it was, but I knew my role and was given incredible support of my own throughout those difficult months… and I will say without a doubt it was one of the most beautiful experiences of my life.

Everyone plays a role with support

This month, we will talk to Kathy Kopitsky, a Residential Director who has supported several adults with disabilities who chose to die at home in one of her community living arrangements. She will share her role in the process, personal experiences and the impact they have made on her life.

We will also speak to Nancy Ledoux M.Div., a chaplain from the VNA Hospice Care who specializes in providing education for people with disabilities, family members and the professionals who support them in the process of death and dying.

The experience of supporting someone through the process of dying can be difficult, but it really is ok to talk about it.

For those who have been there, I’m sure they will agree; the sooner we begin the discussion, the better.

Choosing to Stay Involved in Your Community

This week I introduce John Anton, a self-advocate who is an inspiration to others as he works hard to make a difference in his local and statewide community.

I sent the following questions to John about his role as a civic activist; he and his support advisor, Fran Hogan sent the answers.

John, please tell us about yourself.

“I am a Legislative Intern for State Representative Tom Sannicandro and a Legislative Advocate and Mentor at The Arc of Greater Haverhill/Newburyport. I am also on the Disability Law Center Board, a member of the Haverhill Trails Committee and am active in my church.”

How did you first become interested in issues in your community?

“When I graduated from high school I went to a sheltered workshop. We didn’t have enough work to do and it was very boring. I got jobs at fast food places and Market Basket, but I didn’t fit into any of these jobs either. Employment for me and other people with disabilities became one of my first issues. Transportation was also important because it was difficult for all of us.”

Tell us about your role as a legislative intern at the state house.

“I go to hearings, read bills and research what will affect individuals and families when budget cuts are made. Then I share this information with other self-advocates who follow up with phone calls, emails and visits to legislators when needed.”

How do you choose the issues you want to be involved in?

“It’s hard because they are all important. What helps is studying the state budget and seeing where funding cuts will affect services.
When I was chairperson for Mass Advocates Standing Strong (a statewide self-advocacy group), the issues of transportation, employment, closing institutions, guardianship, and self-determination all became important to me and they still are.”

Why should people be involved?

“You should want to be involved because your voice and your vote count (link to video in new window with John and others talking about importance of voting). Tax cuts affect everyone, especially people with disabilities and their families. If services are cut, individuals may have to stay home and family members will need to quit their jobs to take care of them. If you understand what is happening, you can do something about it.”

What are the best ways for people to be involved?

“Join a self-advocacy group or state-wide committee, attend conferences, volunteer in your community, and research things you are interested in on the Internet. It is also important that your legislators and local officials know who you are.
With the elections over, I will be organizing other advocates to join me in contacting the new legislators and educating them on what is important to individuals with disabilities. We also need to ask them how to work together in the future to make positive changes for everyone.”

Inspired yet?

So the Elections are over, now what?

It’s November 3rd, elections are over and you voted. You should feel proud, but have you thought about how you plan to stay active as a civic member of your community?

At this point, you may be thinking that your vote was enough. After all, elections are a lesson in patience and we are all thrilled to see the end of automated phone calls during dinner and negative ads when we were just trying to watch Glee.

But if you really want to be part of your community, you have to do more than just vote. Being an active citizen means paying constant attention to issues that affect all of us. This includes issues for people with disabilities, but it also includes issues that affect the broader community you live in.

Choosing issues that matter to you

There are basically two types of issues you may want to be aware of in your town and state.

First, there are issues specifically affecting the disability community. A reduction in state taxes for example will cut services, which is an important issue that requires your attention.

At the same time, you want to remember that you are also a member of a broader community with additional issues.
Planning on getting older? A proposed senior center may be something you hope to use someday.
Do you have a dog? You may be concerned about having more dog parks.
Can’t afford housing in the town you want to live in? Groups committed to affordable housing may be something to join.

Committed members of your community

This month, we will hear from John Anton an active civic member of his community. John understands the need to pay attention to issues affecting the disability community and the broader community because he is committed to both.

We will also hear from Andrea Kelly about the League of Women Voters, a nonpartisan organization committed to educating people on important community issues that matter well beyond the elections. In addition, Andrea shares her thoughts about a number of ways you can get involved in your community.

lone goldfish jumping into tank with other goldfishIt’s November 3rd and you should be proud if you voted. But let’s take some time this month to also think about how you can be an active member of your community in the year ahead. .. and more importantly, why you may want to.

5 Reasons Why We Need Another Disability Blog

As budget cuts wreak havoc on services for people with disabilities, we have a choice.

We can continue to advocate for more funding.  Another option is to really listen to one another and learn what supports do exist.

At New England INDEX we choose the second option. As a  respected leader in providing information and resources to the disability community,  we are now offering a venue for people to give  suggestions and share their personal experiences in regards to the resources we write about.

Thus our blog begins.

And our Blog Coordinator is…

My name is Sue Crossley and I am the Blog Coordinator, which basically means I will either be writing the blogs or editing those written by others.

I have over 30 years of experience working for people with disabilities and their families during which time I learned a few important lessons.

  1. A person with a disability is very capable of choosing their own dream.
  2. To reach that dream in life, whether you have a disability or not, you need support to be successful.
  3. The people who support you may be your family or paid staff from an organization that only serves people with disabilities.

But they also must include people from your community who realize that you have something to offer

I have seen many people with disabilities reach their dreams, including home ownership, because people in their communities supported them.

As Blog Coordinator, I want to find the people and programs in your community who want to help others reach their dreams.

A Blog like no other

Five hands coming together like spokes of a wheel

Our blog will be unique for five reasons.
1. A different topic will be presented each month based on what you have been researching on our website.
2. Your stories will be shared so that we can learn what resources have truly made a difference in supporting people with disabilities in the community
3. Exemplary programs will be highlighted each month, programs that may not just serve people with disabilities, but rather the community at large
4. Guest bloggers will be introduced frequently to share diverse opinions and experience
5. Most important, this blog will provide an opportunity for you to become empowered by learning what is working in your community.

Know your community despite cuts

We all stand together at a crossroads as budget cuts are impacting the life of everyone in our state. At the INDEX we believe that our communities still provide a wealth of resources regardless of funding and we need to learn more about these resources together.

Our blog begins next week with the topic of holiday assistance.

We look forward to hearing from you.