National Council of Self-Advocates – Creating a Strong Network of Self-Advocates Across the Country

May 8th, 2012 by

I have been fortunate to participate in Self-Advocates of Indiana (SAI) and Self-Advocates of Tomorrow, the Aktion Club of Columbus. The benefits I have received from being part of these two great organizations far exceeds anything I have been able to do to help support them.

Through my 30+ years of involvement with The Arc (yes, I am a “seasoned veteran”) I have always been connected to individuals with intellectual and developmental disabilities, but it was when I was asked to assist SAI that I truly developed a super passion for the many friends that I have made over the years.

I hope self-advocates throughout Indiana have the opportunity to participate in a local self-advocate group and/or Aktion Club. And hopefully that local group is affiliated with SAI, which in turn supports the national self-advocate group SABE (Self Advocates Becoming Empowered). If there isn’t a local self-advocate group or Aktion Club in your community let Melody Cooper, President of SAI, know. SAI is committed to expanding self-advocacy throughout the state.

At the national Arc level a new initiative has been developed to foster the active involvement of individuals with I/DD in the work of The Arc – the National Council of Self-Advocates (NCSA or the “Council”).  Its primary purpose is to empower persons with I/DD to voice their opinions about what is important to them and to ensure that they are afforded the same opportunities as everyone else to have a meaningful life in the community, and there is no cost to join! Members will be able to network with others who are involved in advocacy work, educate the public about the issues that are important to people with I/DD, and become active leaders in their communities.  In addition, the Council will also promote leadership roles for individuals with I/DD in local chapters of The Arc and supporting The Arc’s commitment to employing individuals with I/DD.

Self-advocates who are interested in joining the Council must be members of a local chapter of The Arc, and can join online through The Arc’s website by visiting:  Join the Council.  It is a simple process that we hope others will help self-advocates access if they need assistance.

The NCSA held its first event during the recent Public Policy Seminar of The Arc and Melody Cooper reported that it was a great gathering and an additional way for self-advocates to connect with others. I’m not sure what the future holds for NCSA but I believe it provides another avenue for self-advocates to be engaged.

Mark Kevitt is The Arc of Indiana’s Director of Program Services



Happy Leap Day from All of Us at The Arc

February 29th, 2012 by



A Good Job

December 5th, 2011 by

A good job.  It seems much of America and Indiana is looking for a good job. So are people with disabilities.  With an unemployment rate estimated at over 70% getting people with disabilities jobs – good jobs that they want and like – is the key to a future without waiting lists.

At a recent meeting Melody Cooper, President of Self-Advocates of Indiana, gave the most impassioned speech that I have heard in a very long time about the importance of jobs for people with disabilities, while at the same time not taking something away from people (the workshop) until there is a good option – an option that each person has picked for him or herself.   And you know Melody is right.

We can do so much better, but it is working with people as individuals that makes the most sense.  Too often in the rush to change we have forgotten what makes work important in the first place.  A recent NPR report shared that the most important thing to people who self-declared that they “love” their job is they work with people they really like.   How often do we ask people about who they work with?

One of our key self-advocates also shared something very important with me.  When we were talking one day he shared that he really wanted to leave the workshop but had not.  When I asked him why, he said, “John I don’t want to let anyone down.  What would people think if I tried something and got fired?”

A mother shared with me that she fits within a recent statistic from The Arc study of today’s families.  20% of families report that one parent has to quit working to take care of their son or daughter who is waiting for services. That cannot be good for a struggling economy.

Work, and a good job, is the key. In pursuit of that we cannot forget the staff that help people find jobs.  The Blueprint for Change calls on developing a progressive wage rate for Direct Support Professionals.  I recently attended a celebration at Noble of Indiana, our local chapter of The Arc in Marion and Hamilton Counties. Through Project Search a dedicated staff person had placed a person in a job that paid more than she made.  Good for the person she supported, not so good for her.

The Blueprint also calls for new models to support jobs including self-employment and entrepreneurship.  Not everyone needs to work for someone else.  Some are much better suited to working for themselves.  How do we help them with that?  We are working with Self-Advocates of Indiana to explore that topic.

So it is all about a good job.  We have a lot of work to do to make that a reality for far more Hoosiers, but The Arc – with your help – is up to the task.



On Gratitude and Attitude

August 11th, 2011 by

OK, I will be honest.  I have been feeling a little sorry for myself lately.  My roof is leaking, the transmission on my car is going out, a tree was hit by lighting and fell down in my backyard.  There is nothing really big going on and definitely nothing worth getting upset over.  But, instead of looking at all of the things that I have to be thankful for, I’ve been concentrating on all of the unexpected things that I have to deal with.

This morning I became ashamed of myself. 

I spent several hours at the first day of the Self-Advocates of Indiana Conference.  I listened as individuals with disabilities from around the state shared their goals, their dreams, and their hopes for the future.  Not one time did I hear anyone complain, grumble or feel sorry for themselves.

It wasn’t very long ago that most of the people in attendance would have been living in state institutions.  They would not have been able to work and they most certainly wouldn’t have been able to plan and run their own conference. 

The workshops were on topics like voting, employment and leadership.  One of my favorites was “Paying it Forward”.  While I was thinking poor me, they were not only taking control of their own lives, but they were talking about how they could help others. 

I am humbled every day by the incredible individuals that I am fortunate enough to be able to work with.  And, today was no exception.   Self-Advocates of Indiana is an amazing group of individuals.  Thank you for being the strong, courageous, determined individuals that you are.    You reminded me today just how important attitude is.  

I was also reminded how important the work of The Arc is.  Our communities would be missing an incredible blessing if the institutions were still open.  For me personally, I would be missing several friends.

No matter what may be going on in your lives, please join me in supporting The Arc of Indiana.  Gifts can be made on-line at www.arcind.org or by mail at 107 N. Pennsylvania Street, Suite 800, Indianapolis, IN  46204.

My roof may be leaking and my transmission going out but my attitude has definitely been adjusted.  In fact, I’m heading back to the conference.  Tonight is pizza and a dance!

Jill Vaught is The Arc of Indiana’s Director of Organizational Advancement



The Best Weekend I Have Ever Had in My Lifetime

August 5th, 2011 by

Shawn Rector 

The best weekend I have ever had in my lifetime was at the Best Buddies Leadership Conference 2011. Thanks to all the best buddies.

I had one of those priceless weekends.  The Best Buddies Conference was awesome.  The new Purdue college buddie director really made me come out of my comfort zone and would not take no for an answer.  I even led the conga line.  Anyone who really knows me knows that I am the one that sits back and watches everyone else have fun.  Not this weekend.    

Thank you Maddie – going to be great year at Purdue best buddies!

Shawn Rector is a member of The Arc of Indiana Board of Directors and is President of the Aktion Club of the Wabash River in Lafayette, IN



Inspiration from Austin, a Young Self-Advocate, from the Autism NOW Midwest Regional Summit

June 30th, 2011 by

At last week’s Autism NOW Midwest Regional Summit in Indianapolis I had the opportunity to lead four sessions on the question, “What does self advocacy mean to you?”, as well as sit in on discussion groups on “self advocacy,” “language” and “community based employment.”  It was a wonderful experience and it was fascinating to listen to the different perspectives on each of these topics.

While I came away with a number of memories, one person stood out – Austin, a 13 year old with autism. Austin discussed self advocacy from a very personal perspective.  To him, self advocacy is being involved with his life and future. One can wonder how any 13 year old might have a vision of his or her life, yet Austin talked about his own self advocacy.

It began more than two years ago when he had had enough of bullying at school. If you are a hockey fan like I am you know that it’s usually the player who retaliates that ends up in the penalty box. Austin’s experience was no different. He had had enough of the bullies and so he retaliated. And he was sent to the penalty box – the principal’s office. No matter what he said he was the one in trouble.

And while to this day it still irks him that he was the one in trouble, he decided to approach his life a little differently. And he quickly identified he wanted a say in his school IEP case conference. So two years ago he began participating in his case conferences.

In his case conference, Austin shares what he wants from school, what his goals are and how he’d like to reach them. He says he’s learned to be a strong voice for his positions and yet tries to listen to all sides. He seems pleased that school is going better. He has suggested some anti-bullying approaches and believes he is listened to.

I, along with the rest of the participants in that session, was impressed. We “professionals” talk a lot about self advocacy;  here with us is a 13 year old who lives it.

You can listen to Austin talk about bullying in his interview with Michelle Fischer, host of The Arc of Indiana’s audiocast, “A View from My Window.”
Listen Now!

It’s a great feeling, knowing that Austin symbolizes future leaders in the self advocacy movement. All of this got me thinking about the upcoming Self Advocates of Indiana Conference and Annual Picnic on August 11 & 12 in Indianapolis. Not everyone with a disability has the confidence and comfort level in speaking up like Austin. The workshop sessions and presenters at the conference will talk on a variety of topics that are meant to instill and inspire such confidence.

If you are a self advocate – or a relative, staff person, or advisor to a self advocate group – I encourage you to get the word out about the conference.  And please come! We need more Austins. 

Check out complete information on the 2011 Self Advocates of Indiana Conference and Annual Picnic and register today!

Mark Kevitt is Director of Program Services for The Arc of Indiana



Lesson from the Autism NOW Summit – I am not alone!

June 27th, 2011 by

I am not alone!

We just finished a wonderful weekend at the Autism NOW Midwest Regional Summit.  It was amazing how many times families and self-advocates shared how relieved they were to feel that they are not alone in what they are going through.  You cannot underestimate the power of community and what it felt like for people to make connections.

People from across the region participated – many for the very first time – meeting with other families and individuals with autism and other disabilities in inspiring and uplifting discussions. 

A mother shared with me that she quit going to support group meetings as it left her more depressed than encouraged.  “This is different,” she said, “I am ready to get involved and know it is up to me.”

In these turbulent times, we often find oursevelves faced with very significant challenges.  As one of my early mentors shared with me, ”We often sit and talk to ourselves about our problems instead of what we are going to do about solving them, and that means talking to others.”

What a great reminder of what brought us together, made us grow and what coming togehter will help us continue to do during trying times.



People with Disabilities CAN and WANT to Work

May 19th, 2011 by

The May 18th  statewide meeting of Self Advocates of Indiana (SAI) once again reinforced something that I’ve known for a long time – employment is important to people with intellectual and developmental disabilities.  

About 65 self advocates and others attended the quarterly SAI meeting in Indianapolis to learn and share about the topic for the day,

.

“Employment – Is it a Big Deal?” A panel of self advocates, state officials and professionals discussed the topic – sharing their stories, information on available services and ideas on pursuing employment and the policies needed to support work.  Those attending the meeting shared their employment perspectives and stories with the panelists.  They asked some tough questions and sought answers on how to make work “work.”  

Individuals at the meeting shared that while they like receiving a paycheck, what they really enjoy is working with friends and people that like and help them. This reflects some similar national studies on what people in all types of employment settings look for in a job.

One individual who attended the SAI meeting wrote on the meeting evaluation form, “The meeting was good because there are so many people coming together to help people or make people with disabilities find jobs.”  Another individual wrote about “finding jobs you like and can do and getting there on the days you work,” and also wrote about the importance of “keeping the jobs you get away from where the workshop is.”  

The SAI program topic on employment provided a follow up to the Regional Self Advocate Summit that took place in Columbus, Ohio at the end of April. At that program the Indiana delegation, led by Melody Cooper, President of SAI, developed an action plan for Indiana on steps to strengthen self advocacy.  After discussing many possible areas of focus, the group decision was to focus on employment, with an emphasis on educating the business community and others that “People with disabilities CAN and WANT to work.”

Tonight the local self advocate group in my hometown of Columbus, Indiana is hosting a cookout for those who are completing their high school careers this spring. We’ll probably learn that some of the students have jobs in place that will continue after they leave high school and some will be moving on to new educational or training opportunities, but we will also meet graduates who will be waiting for services and uncertain as to what is in store for them.

The message I keep hearing is that everyone can and should work – not a difficult concept to understand, just difficult to implement. We must all join with self advocates in ensuring that real jobs with real pay are available for all individuals with intellectual and development disabilities, whether they are just now completing school or they are or have been out of school for some time and are looking for opportunities to work.

Mark Kevitt is The Arc of Indiana’s Director of Program Services.



Why I like My Aktion Club

April 7th, 2010 by

Norma Jean Schwering, a Self-Advocate for The Arc of Indiana’s The Arc Network, blogs about why she likes being in the City Of First Aktion Club in Kokomo, Indiana.

I have been involved with the City Of First Aktion Club for five years.   

I help out with the fund raisers that we have.   I like going to the mid year conference.  I like going to the Indiana Fevers game and to a softball game. 

I like volunteering on the second and fourth Thursday of the month.  I had done some volunteering when I lived in Shelbyville, and so what I had learned from volunteering I just packed it all up and moved it here to Kokomo. 

I like it.  I get to help with dances and like helping with the candy sales and helping with chili dinners and and I like volunteering at Kokomo Rescue Mission.  I also do some volunteering at Trurle Creek where I go and talk to one of my neighbors for about four hours and watch TV with her.  I even walk some neighbors dogs outside so that can go potty outdoors!

I like being in the club because I can do things that I didn’t before.

Learn more about Aktion Clubs, and see photos of folks at Indiana Aktion Clubs, by visiting  http://slp.kiwanis.org/aktionclub/home.aspx



Building Pathways to Housemates and Common Sense

March 19th, 2010 by

One of the critical areas for saving state funds over the next two years is finding the right housemates for people receiving 24-hour supports who could lower their Medicaid waiver budget by sharing living expenses and staff supports.

The Arc’s position with the state, providers and families is that we must look every way we can to find ways to save money.  A reasonable, rational and respectful move toward housemates will, over time, help save over $25 million a year. 

Since we put this out in the latest issue of Arc News in Indiana I have had several really interesting and enlightening conversations on this issue.   Several parents and self-advocates have commented to me directly how much they welcome this, but that that they need to find the right housemate. 

While the pressures to find housemates are real, we all have to be careful in the approach and be aware that every situation is different.   

Yesterday I spoke to the Self-Advocates of Indiana Board of Directors about this issue.  A self-advocate shared a powerful story with me about how she and her roommate came home from work on a Friday only to find two new people in their apartment.  No one told them they were coming; no one introduced them or prepared the other two women for the move.  Needless to say no one was happy, including the staff.  The young woman telling the story shared that the end result was that at the end of the weekend the staff wrote a BEHAVIOR PLAN for her because of her “bad attitude”!  Simple common sense tells us that we certainly can do much better.  

The conversations I have had about housemates have offered a great opportunity to talk about our roommates’ bill of rights.  While The Arc supports finding ways to share costs, it must be done in a reasonable way.  Please take a few minutes to read the Roommates Bill of Rights and think about how you would like to be treated in a similar situation. 

Recent conversations have brought up other thoughts on how funds can best be utilitized.  I talked with a provider seeking advice on how to handle a difficult issue.  A family wanted their loved one to live in an apartment on one side of town close to them, but also wanted a day program nearly an hour away from the apartment.  Only one of the three people in the apartment would be going to that program.  Staff would need to drive one person an hour there and an hour back, and then, four hours later, make another two hour round trip.  This would require four hours of staff support for one person just for transportation. 

In this situation, what is the answer to supporting family and consumer choice within limits of staff resources and funding?  Is there another pathway to get to the right goals?   

I am reminded of a story from years ago. Staff  found a wonderful job  for a young man named Peter, but Peter had real problems getting on the right bus each day to get home from work.  Having a staff person there every day when he got off work was too expensive – particularly as it seemed this would have to be a permanent solution.  However, a wise person suggested that the job coach spend a week with Peter at the bus stop to see who else got on that bus each day and who the bus drivers were.  Since Peter had difficulty talking they introduced him to several people who got on the same bus and asked them to look out for him.  They introduced Peter to every bus driver and gave Peter a laminated card that in big type asked, “Is this Bus 105?”  Within a week, Peter had a group of people helping him make sure he got on the right bus.  Instead of the state spending over $40 a day to make sure he got on a bus, Peter developed friends willing to look out for him – the cost of that? - Priceless.   

At the end of my presentation on housemates to the Self-Advocates of Indiana Board of Directors, I could tell that one of the board members was feeling very emotional.   He came up to me afterwards and told me how much he worried about his elderly parents who are in their 80′s.  He said he carries the cell phone number for Steve Hinkle, President of Easter Seals Arc, in his wallet just in case something happens.  “Steve gave it to me, and I know if something happens he will be there for me.”

We can never forget that thousands of people are counting on people like Steve, you and me to make sure that call is answered.  Getting through these difficult times will require new thoughts, new responsibilities.  I am confident that together we will find that new path.



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