Starting the Conversation

May 4th, 2012 by

How do you best start a conversation?

The Indiana Family and Social Services Administration (FSSA) started a conversation several weeks ago about an opportunity Indiana could take through the Affordable Care Act that offers state incentives to serve more people in the community and fewer people in nursing homes and other institutions.  This effort would bring in $20 million a year for three years for services for persons with developmental disabilities, but it would mean making changes in Indiana’s group home program.

This led to two very different conversations over the course of two different nights.

In one, Easter Seals Arc of Northeast Indiana brought together over 50 people who have sons and daughters in group homes for an open discussion about what might happen, what it could mean, what changes parents would like to see, and what parents want to be sure does not change in their sons and daughters lives.  It was a really good conversation that helped every one learn a lot.  Feedback from the meeting – including that people who have lived together for many years want to continue to live together and that others are excited about the possibility of a new living situation – was shared with state officials.  They took that information and began to incorporate it into their continued conversation around group home reforms.

In the other, a provider (that is not a chapter of The Arc) told a group of parents that The Arc of Indiana is abandoning their sons and daughters; we are out to close all the group homes; and we do not care that their children will be scattered to the four winds.  They suggested that the group home would close April 1st; there was nothing anyone could do about it; and The Arc was all behind it.  I talked to several of these families and after getting through their anger and understanding that The Arc was not working against them we had a great talk.

In this day and age it seems anything goes.

It is not clear at that this time if in fact the state will move from having a conversation to actually making any significant change in group homes.  We do know, however, that change is coming in many areas of programs for people with I/DD.  We think it is critical for families and advocates to be part of that important conversation in constructive ways.  Clearly the first approach illustrated here provided good information and an opportunity for families to share their concerns.  The second approach only scared people.

We welcome the opportunity to meet and have a conversation with local support groups, state organizations, family groups and people with I/DD. We will always choose to begin and continue the conversation with fact based information and openness to hear and learn from others.

Call us, email us, share with others in our forums for families, self-advocates and providers.  Let’s start or continue the conversation.

You can reach John Dickerson at: 317-977-2375, 800-382-9100, or thearc@arcind.org.  Talk with each other in our family, self-advocate and provider forums.

John Dickerson is Executive Director of The Arc of Indiana



The Right Debate

April 25th, 2012 by

Recently a major candidate for president and then a political writer quoted a statistic that got me thinking and then checking.  The quote was, “95% of children with Down syndrome are aborted.”  I wondered if that statistic could be accurate, so I went checking.

The latest data from the Indiana State Department of Health shows that we have nearly the same incidence of children born with Down syndrome today as was documented when I started in this field 40 years ago –  approximately 1 per 1,000 live births, with a higher incidence for women who are older, as was the case 40 years ago.  And the Department of Health does keep really good data.  So in Indiana, with about 80,000 live births a year, we are still seeing an average of about 80 children born with Down syndrome a year.  Just as we did 40 years ago.

After one of these comments I received several calls from parents of children and adults with Down syndrome – some furious and some like me just wondering where did this come from.

Certainly, abortion is one of the most challenging discussions for people to have.  And the lines are drawn quite clearly.  And prenatal testing, which has advanced over recent years, gives prospective parents more information than ever before.  But is it interesting that the birth rate in Indiana for children with Down syndrome has held steady over these same 40 years even with the medical testing interventions.

The issue of abortion has been described lately as a disability issue and for some this might very well be the case.  But then again, no one really knows as there are no records regarding why someone chooses an abortion or how many choose not to do prenatal testing.  My daughter is taking a childbirth class at a local hospital – I will be a grandpa for the first time May 31st – and while she knows the sex she chose to not do any testing, something her doctor said is more common.  She was surprised that over half the parents in the class did not even know the sex of the baby, much less do prenatal testing – certainly anecdotal and not scientific – but interesting.

Several years ago The Arc wrestled with this issue very carefully and thoughtfully and came up with a very clear position that recognizes that every woman  under the law has a right to choose, and if they choose to have prenatal testing be part of that choice they should have access to information that shares that all children, regardless of whether they are born with a disability or acquire a disability along the way, have a bright future ahead – a future filled with joys and sorrows, rewards and risks, and great possibilities.

I am not sure why these recent statements were made and how they are linked to the politics of the day.  My thought is, if someone asks you for your vote, ask them what they will do for people with disabilities and how will they make sure the policies they support lead people with disabilities to a quality education, independence, opportunities to work, and a full life with their family, friends and community.

John Dickerson is Executive Director of The Arc of Indiana



What’s in a Name?

March 28th, 2012 by

It was 1956 when a group of families, moms mostly, who had children with developmental disabilities came together and formed The Arc. At that time there were very few options for their sons and daughters. They wanted to change things. Some started schools, some work programs, and some advocated for change.

The first two lobbyists for The Arc were moms, Ilene and Dorothy, who decided that in the all male State House they would stand out by wearing hats.  I think they both would be tickled by recent conversations by people who have very different ways of describing The Arc.

At one meeting we were described as a provider organization since some of those very first Arcs that families formed, and who still have family members serving on their boards, provide services. It would surprise our current state board, which has only one provider representative and 24 family and self-advocate members, that someone considers them to be board members of a provider organization.

At a second meeting, just the next day, The Arc was chastised for being so consumer oriented that we were ignoring the role of providers in addressing the needs of families and people with I/DD. Throughout our history we have embraced that it is essential to have a fair reimbursement system that provides for strong leaders, direct support staff continuity and quality programs. We also want flexibility for families and providers to work together to stretch the money as far as possible.

How people see you is interesting. Just as in those early days when Ilene and Dorothy chose to wear hats to get attention to the issues, The Arc is all about how we make Indiana better for people with intellectual and developmental disabilities and their families. Our mission – guided and supported by our board of directors, a network of 44 chapters and 40 self-advocacy organizations and over 18,000 individual members – is still about change. It is important to remember, however, that to achieve change Indiana also has to have a vibrant provider network that listens to and works with families and is ready to respond to what people want and desire. And, we all must be cognizant of the economic pressures on the state and make sure we use just what we need and stretch resources as far as we can. That means some our very systems need to change.

I think our early founders would share the vision of change adopted recently by The Arc board in our Blueprint for Change. I think they would also say, it doesn’t matter what you call us. I remember one state budget director when being interviewed about people working for a cause, cited The Arc – why we never give up and keep coming back with another idea to solve the problem; and he said Indiana was better because of it.

So, what should people call us? How about effective – effective because of you – moms, dads, brothers and sisters; self-advocate leaders and friends; and, yes, professionals who have dedicated their careers to serving and advocating for people with I/DD and their families through their work and dedication to the local chapters of The Arc.

Yes, I think effective is a good name.

John Dickerson is Executive Director of The Arc of Indiana



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



The Arc is There Because So Many Care

January 31st, 2012 by

It may be a New Year, but when the phone rings at The Arc the calls are remarkably the same as they were nearly 30 years ago when I became the Executive Director.

This is what happened in just one day early last week:

  • A young father, whose wife recently died unexpectedly, called because he does not know how he will keep his job and take care of his seven year old daughter with a disability
  • A woman who works in our office building talked with me on the elevator to find out if there is   something we can do to help her son, who has a serious learning disability
  • An elderly man called determined “not to be a drain on anyone,” but because his wife is in the hospital and his daughter in her 50’s needs him, he cannot leave the house to see his wife without someone being a kind neighbor to help out
  • A state senator called to discuss what happens if a group home provider moves all of the people they serve to a new day program, without giving them any choice
  • A local Arc executive director called to get information about programs in another part of the state
  • One of our self-advocates stopped in to celebrate that she and her husband have moved into a new home

And that was all before noon.

And then there is email and the internet – something we definitely did not have thirty years ago.  Today we communicate so quickly in so many ways.  Many families find information and resources on our website; others use our website to connect with us through our “Contact Us” form.  Others find information through our Facebook page or updates on Twitter.

Perhaps our challenges are still the same as they were when I came to The Arc, but our ability to help is greater.

In 2011, 1,177 children and adults with I/DD were targeted to begin receiving home and community based supports through the Medicaid Waiver – this during the “Great Recession.”  Each week we are now getting updates from FSSA on people beginning to receive services – but more are waiting.

Last year, our Waiting List Task Force worked hard to make recommendations on how to address the waiting list when resources are scarce – without having to make Solomon like decisions.  We are pleased to report that those recommendations were well received by FSSA and we hope to see progress on this difficult task soon.

Through The Arc Network, we have staff ready and able to help connect families to programs, services, information, and resources – including natural supports and community connections.

On the education front, The Arc, who advocated for the establishment of a public education for all children, remains a critical voice in education reform.  Through the leadership of our Education Committee Chairman Jeff Huffman and Associate Executive Director Kim Dodson, we now meet regularly with State Superintendent of Public Instruction Tony Bennett.  (Check out our “Conversation with Dr. Tony Bennett” on our YouTube channel.)

All of this is made possible by our supporters, members and chapters.  We are thrilled to be celebrating the largest membership increase in our history – The Arc grew by over 8,000 new members at the end of 2011, bringing us to over 19,000 members statewide.

This is not just a number, but a bridge.  There are thousands of families who have loved ones with a developmental disability and people with developmental disabilities themselves, who don’t know about The Arc – but perhaps through you they will.  There are hundreds of aging parents out there in their 80s and 90s who need help and don’t know where to turn, but through you they may learn that The Arc is here to help. And there is someone out there feeling alone, but they aren’t because The Arc is here to answer the phone, respond to an email and send out this newsletter with information and resources.  We are here to be on the floor of the statehouse, email a member of Congress, answer a reporter’s call or meet with staff from FSSA.

The Arc is there because so many care.  If you are not already connected with The Arc, join us!  Learn more about us by visiting us at www.arcind.org, join us on Facebook, and help our collective voices grow by becoming a member.



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.



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.



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.



Jobs

September 8th, 2011 by

Jobs. 

In 20% of American families who have a child with a developmental disability, a parent has to quit his or her job.  

Fact. 

80% of people with disabilities are unemployed or at best under employed. 

Fact. 

Whatever the conversation coming out of Congress is, politics must be set aside and jobs for Americans, and in particular jobs for people with disabilities, must be high on the agenda. 

Not only do people with disabilities want jobs, their parents are looking for jobs because they either have had to quit working because there is no program for their son or daughter to help put them to work or they have lost their own job due to the recession. 

Vital programs, such as vocational rehabilitation and supported employment,  that help put people to work are on the chopping block.  Many have already been cut.  How does that help the Indiana economy?   

If your company wants to hire someone but that person has a son or daughter with a disability and they can’t come to work because the program that helps them has been cut, or they are on a waiting list for help to get a job, no one wins.

In this debate, it’s a lot about who is going to win the next election.  What it should be is who is going to get the next job.

The Arc of Indiana calls on elected leaders of both parties to put the issue of jobs four square in the front of everybody’s agenda – not the next election and not who will take credit or who will be blamed for the current economic situation.

Too many people are hurting.  Too many people are waiting for leadership.  Now is the time to act.



D.A.D.S. – a place to find what we all need – support, encouragement and friendship

August 19th, 2011 by

What a night!  

Last week I had the chance to speak with one of my favorite groups, D.A.D.S. - Dads Appreciating Down Syndrome.  This is a unique effort that now has over 50 chapters around the country.  When I first went to one of their meetings several years ago, it was a first in nearly 40 years – a room filled only with dads, talking from their perpective about the issues of supporting their sons and daughters.  

The topic on the night I was there last week was getting involved with public policy.  Joe Meares, one of the founders of D.A.D.S., and I had a chance to share information on critical issues and how as a dad they can make a difference not only for their son or daughter, but so many more.  The response was terrific.  One dad volunteered to be their new policy leader, another wanted to get active in seeking out options to the group home where his son now lives, another wanted to learn more about creating a self-employment opportunity for his son, and another shared that his son just started with Project Search. 

To cap off a great meeting at the end a new dad, Roger, gave the most powerful talk.  His child was born just a few months ago and he did not even know what Down syndrome was.  He got on the internet and found about D.A.D.S. and came to the meeting, thinking he might meet a couple of people and get  pamphlet.  Instead he found over 20 dads there offering support, encouragement and friendship.  

In these challenging times, we all need all three – support, encouragement and friendship.  And as Joe pointed out, it is also a time for heavy lifting.  But heavy lifting is done best when others all help out. 

Joe challenged the group to contact their state and federal legislators whenever they get a request or opportunity to begin the process of building a relationship. 

I am proud that The Arc is connected with D.A.D.S.  If would like more information or know someone who might want to get involved, please visit their website and make the connection.   D.A.D.S. is also looking to charter new groups across the state and nation.  Maybe you can be the dad to get a group started in your town.

I am often asked how I can be so optimistic.  I shared with the group that this is the greatest time in my life to be part of  such an exciting time.  At no time in our past has The Arc been needed as much as we are today.  And to have a group of people like this to help us, how can we not be optimistic about the future!

As one dad texted to his wife at their recent charter night, “This feels really weird,” then a bit later, “This is interesting,” then a bit later, “This is really good!” and finally, “This is really cool!”



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