The Times They are a Changing

March 2nd, 2012 by

I often get accused of being stuck in the 60’s – can’t image why. This morning I was reminded of this as I listened to Peter, Paul and Mary sing “The Times are a Changing,” but instead of the 60’s, the song took me back to 1956 when a few dedicated parents started The Arc because they were not satisfied with the status quo.

At that time a very established infrastructure and funding mechanism existed that served thousands of people with intellectual and developmental disabilities (I/DD) across the country, including Indiana, in large institutions. Professionals and government officials considered it to best practice and the best we could do.

Then families asked for something better. They met with resistance. The common refrain was this is what works, it is where the funding is, and it is where people with I/DD are best served.   Many families of those in institutions did not support or like this new movement. Others welcomed it as a chance to bring their sons and daughters home, or to reject the recommendations of doctors at that time to place their child in an institution.

Thankfully, those early pioneers persevered.  They advocated and fought for their children to go to school with their brothers and sisters, created job and day programs for adults, and helped build a system of community residential services.  Thanks to their efforts, Indiana is now the largest states in the national without an institution for people with I/DD.

As I listened to that Peter, Paul and Mary tune this morning, I reflected on the tremendous changes we have seen in Indiana and how we have to keep changing.  We have to look to new models and new ways to meet needs, and we have to follow the vision of families who continue to lead the way.

A dad recently shared that the first meeting to create a service plan for his daughter, who had finally come off the Medicaid Waiver waiting list, focused entirely on how to spend $40,000 instead of focusing on what she needed.
He asked, “How have we become so institutionalized in the community?” Another mother recently told me that a meeting about her son’s waiver was “all about dollar bills; not Bill!”

We have to change. The waters are rising.  We have to look to new ways to address the need. To do this, The Arc pulled together the best minds in the country and key Indiana advocates, including families and people with I/DD, to develop the Blueprint for Change.  This led a small group to recently develop a proposal for a federal innovations grant that looks to a new way of approaching services.  We believe that FSSA’s soon to be released 144 Report for Medicaid Waiver reform – directed to be developed by the Indiana General Assembly – will offer steps in the right direction.  A federal initiative to provide incentives to states to provide a better balance between institutional and community based services could bring in new federal dollars to  transform Indiana’s group home program, bring people out of nursing homes, and bring thousands of people off  waiver waiting list and into a new model of home and community based supports.  As has always been the history of The Arc, these changes offer both great challenge and great opportunity.

I don’t think I am stuck in the sixties.  I hope that I am stuck with the spirit of those pioneering Arc families from 1956.  I absolutely do not believe we have done our best work yet.

John Lund, one of the national leaders who helped shape the Blueprint for Change, has said that it was very easy for him to challenge institutions and fight to get people out, but years later it was very difficult to admit that he had created a new institution by building the largest community agency in the state serving thousands of people in a model that no longer offered the best that could be done for people with I/DD.  He realized he had to begin the hard, but exciting, work of taking apart something he had proudly built in order to develop something better.

A lesson I learned when the New Castle, Muscatatuck and finally Fort Wayne State Developmental Centers closed is that the people who worked there included some very dedicated people who truly believed that they were providing care in the absolute best placement. Many families were adamant that their son or daughter could not live anyplace else. Rather than judging them, we needed to show them that there was and a better way.

Many families and providers today are at the same point. They strongly believe that Indiana’s system of programs and services best serves individuals and families.  On the other hand, many families, providers and advocates believe we can do better, and many, many families feel they have no hope of receiving supports unless something changes.

I was four years old in 1956 – a time when families had the vision and determination to build a better world.  I see that same vision and determination in the eyes of today’s families and self-advocates, and I embrace that the times are indeed changing.

John Dickerson is The Arc of Indiana’s Executive Director



A Busy Week Planning for A Great Conference – Join Us on November 1!

October 28th, 2011 by

We are getting ready for The Arc’s state conference on Tuesday, November 1 and it’s been a busy one week!


If you haven’t registered yet, please do. This is going to be a great day. We are releasing our Blueprint For Change. This is a roadmap to provide transformational change in the system that serves individuals with disabilities.

Everything is built around five guiding principles:

 

1. Building Career Pathways for All

2. Discovering and Realizing Individual Gifts

3. Supporting Resourcefulness of Individuals, Families and Communities

4. Using What You Need

5. Shifting the Power to What Works

On Tuesday, we will start the day by introducing the Blueprint. Concepts and ideas from the plan will be laid out along with what the next steps are.

Following the plenary session, individual workshops on each of the five guiding principles will be held. I’m not sure what I will do because I want to go to all five!

In Building Career Pathways for All we have a provider and four self-advocates who will talk about all of the exciting employment opportunities that are available. This provider even found a job for a woman who said she was looking for something that she could do from home in her pajamas.

We will have brothers who sing and play the keyboard along with two artists in Discovering and Realizing Individual Gifts. There will even be a young man who discovered his gift with animals who is in college and will make that his career.

Two men from DADS, Dads Appreciating Down Syndrome, will provide a wealth of information during Supporting Resourcefulness of Individuals, Families and Communities. And three moms will be discussing how they have been creative in providing for their children during Using What You Need.

The fifth workshop will feature a parent, a self-advocate and two providers. They will be discussing what we could do to shift from doing what doesn’t work to doing what does.

Following the workshops we will be recognizing special individuals at our awards luncheon. And we will wrap up the conference with a Call to Action by Tim Shriver, President and CEO of Special Olympics. He will be joined by four passionate individuals from around Indiana. After the conference we will have our Annual Meeting followed by a Board of Directors Meeting.

It is going to be a busy but wonderful day full of great ideas, information and inspiration. I encourage everyone to join us on November 1.

If you have any questions please call us at 317-977-2375 or visit our website at www.arcind.org.

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



Happy New Year! Join The Arc!

October 26th, 2011 by

Happy New Year! I realize it’s not actually the beginning of the new year, but (as I write this) it is the beginning of the new NHL hockey year/season. So let me join the ranks and say let the season begin.

You may wonder why I am rambling on about the new hockey season. In less than a week, on November 1, The Arc of Indiana begins a “new year” with the presentation and discussion of the Blueprint for Change at our annual conference.

A new beginning has been mapped out – new pathways on which to begin a new journey. As you’ve read here and elsewhere lots of work for a couple of years now has gone into the development of the Blueprint. It’s an exciting time as we face the future, a new beginning, a new year.

One of my responsibilities with The Arc is working with the local chapters in recruiting and supporting the individuals and families who are the members of The Arc – the voices and faces of our organization. During the last quarter of the year I usually am encouraging chapters to wrap up any last minute membership recruit efforts. Last year our statewide membership total was 10,000 members, the largest ever in the history of The Arc of Indiana.

We still need to have the end-of-year count. But it’s different this year – the “new year” begins with the Blueprint on November 1. On that date at The Arc’s Annual Meeting our chapter representatives are being asked to vote on a Membership Resolution submitted that calls on The Arc of Indiana and all of our local chapters to make a significant end-of-year push for members. In these challenging times as the Blueprint for Change is unveiled, a strong statewide membership recruitment effort is needed.

Next week we’ll be announcing to all of our chapters the efforts The Arc is undertaking to support our local chapters in significantly increasing our membership by the end of the calendar year. The Arc’s membership committee has meet to develop plans, there has been discussion with ICEArc, the organization of our local executive directors; and now it’s time to roll out the campaign and share with our chapters why members are important and how they might significantly increase their membership.  You can learn more about membership and join now by visiting, Join The Arc!

Be sure to join us at The Arc’s 2011 Conference & Appreciation Luncheon to learn more and see which chapters are being honored for their participation in our 2011 spring membership campaign – including the chapter that will receive The Arc’s version of the Stanley Cup, The Arc’s Membership Traveling Trophy.

“Happy New Year!”

Mark Kevitt is The Arc’s Director of Program Services



A Path Forward – We Can Do Better

October 20th, 2011 by

As presidential candidates argue, talk show hosts yell and programs lose funding – families are asked to struggle on. And while they do, the system that is supposed to be there to help them is breaking.

Many of the community programs that provide a safety net for people with disabilities are struggling to survive. When elected officials talk of more spending cuts one can only wonder what will happen.

With each cut comes the loss of jobs for people who support individuals with disabilities, the reduction of wages of staff, and more folks turned away from services – all while struggling to survive in a difficult economy. It seems more and more burdens continue to be placed in the way.

We think there is a better way forward. On November 1st The Arc will announce the Blueprint for Change at our 2011 conference. It offers a path forward, but asks something of everyone. It is all about what we need to achieve for a better future. But to get there some things will need to be changed and even given up.

We hope you will join us on November 1st, and stay with us for the journey – we will need you.

Learn more and register today by visiting: The Arc of Indiana 2011 Conference, A Blueprint for Change.



Lessons from the National Convention – We are Not Alone

October 7th, 2011 by

I recently attended The Arc of the United State’s Annual Convention held in Denver, Colorado. It was wonderful to network with colleagues from across the national, but sad to realize that services and programs for people with intellectual and developmental disabilities are getting hit hard everywhere, not just in Indiana.

It was energizing to hear the buzz about what The Arc of Indiana is doing with the Building Pathways to Empowerment Campaign and hear that people around the country are looking forward to seeing the Blueprint for Change.

Several of the national speakers at the Convention commented on our bold actions and one, who served on our Big Minds Groups, was able to speak first hand on the issues being addressed.

The fact of the matter is we are not alone. Nationwide people are trying to think of new, bold ways to improve the service delivery system for people with I/DD. We do not just represent the thousands of people receiving services, we also represent the thousands more waiting for services. We must find a system that balances the needs and get services to those who need them most.

We must empower families and self advocates to shift the power to what works. We must create a system that has less bureaucratic red tape and places more control and responsibility with families and people with I/DD.

Many across the country have their eyes on Indiana and how families, self advocates, and providers will react to the Blueprint for Change. Now is the time for bold action – a time to renew our commitment to working together to achieve a better life for people with I/DD and their families.

Kim Dodson is The Arc of Indiana’s Associate Executive Director



A Moment of Celebration

September 28th, 2011 by

Saturday I took part in the first Eunice Kennedy Shriver Games in Indianapolis. Organized by Special Olympics Indiana at Brebeuf High School, it was a wonderful celebration of Mrs. Shriver and also a great reminder of how every day connections provide small but meaningful ways to celebrate.

While watching the games I was introduced to Denise, a delightful young woman (about my age) who enjoys Special Olympics as an athlete (bowling is one of her favorites) and who has found a way to give back, setting a record in raising money for Special Olympics. 

Denise has worked at a local medical office for over a decade, and lives at home with her parents who are in their 80s.  She describes it as “I am taking care of them now.”

It was this key moment of celebration that reminded me of how much we have accomplished and how the power of something so simple as bowling brings people together.

In the Blueprint for Change we envision a world that promotes the independence of Denise, supports those who need more, and builds on  relationships with organizations like Special Olympics, family support groups, churches/mosques/synagogues, community centers, etc., etc. 

Thank you, Denise, for your wonderful work and your commitment to finding ways to give back to others; and thanks to all of you who strive every day to make Denise’s life, and the lives of others with I/DD, better.