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!”



Debt Ceiling Deal and Disability Policy – Stay Tuned and Get Involved

August 4th, 2011 by

Now that the debt ceiling “deal” has been reached and the media circus has temporarily left town, we are left to figure out what really happened and what it means for disability policy and people with disabilities and their families.  It will be weeks as more details unfold.    

One thing we do know – republicans refused to look at revenue – including reducing tax subsidies on big oil – but did consider and approve eliminating loan subsidies for graduate students.  While one was considered a tax increase on big oil companies, the other was not considered a tax increase on graduate students.  

While all of this was going on, the failure to act on the Federal Aviation Administration – a political battle over unionization of airline and railroad workers and subsidies to rural airports – has already led to the layoff of up to 40,000 construction workers and thousands of FAA employees.  In addition, since Congress went on a month-long vacation, lost airline ticket taxes will exceed $1 billion dollars for the time they are on vacation.  

What would $1 billion do to provide support to families?   That amount would allow nearly 200,000 families in desperate need to get family support, respite or behavioral therapy for a year.  Perhaps  that $1 billion should be deducted from the individual budgets of every member of Congress by lowering their staff budgets and personal salaries proportionately.   This is not new taxes, just a failure of Congress to do its job to keep the government running.

But, back to the Debt Deal.  The next step will be meetings of the “Super Congress” – 12 people will have to reach a new deal by Thanksgiving  and get Congress to vote on it by December 23rd or automatic triggers will kick in.  All of this ignores the core problem facing us – jobs.  

At a time when unemployment is fueled by a lack of hiring, and companies are not hiring because people are not spending and creating a demand for products and services, we are entering a time of austerity that will reduce demand even further.  There is no doubt that a plan is needed to reduce the deficit, but I am afraid this is not it.  

The result?  For the next two years anything funded with federal discretionary money will be on the table, and close by on the table will be entitlements like Medicare, Medicaid and Social Security.  We need reform and we need restructuring, but we also need new revenue.  It may not just be the wealthy (and of course everyone had a different view of who is wealthy, and usually people see that as those who earn more than they do) who need to pay higher taxes to fuel our way out of this.  We no longer can expect something for nothing.  And it will take political will – not just the political will to get elected – but the political will to do the right thing for all Americans.  

People with disabilities and their families cannot be spectators in this process. If we remain silent we will be pawns sacrificed by others who do not share in the sacrifice.  We need to be active, informed and involved.  For some politics is a dirty word.  But we need to be involved in both parties, in every opportunity we have, to add our voice to this debate. 

Take a step toward getting involved today.  Visit our Legisalative Action Center where you can sign up to receive Action Alerts and learn how you can be involved in the political and policy making process. 

The media circus and members of Congress have temporarily left the building, but it will be back soon, along with your congressional representatives.  Like it or not, you need to be involved.  The Arc will be there – and we need you to be there too.



The Debt Ceiling Vote – What Does it Mean to You

July 11th, 2011 by

We are currently watching the highest stakes game ever as members of Congress and the White House determine who will blink first in the battle of raising the Debt Ceiling.  Both Democrats and Republicans have agreed  that spending must be cut - yet they differ on how.  Will Congress only cut spending, including spending on people with disabilities, or will Congress seek a balanced approach that looks at raising revenues – including taxes.  

Everyone gets the problem, and most I talk to see an answer that is balanced.  Yet the lines are not to be crossed on revenue.  In fact, despite record profits, some describe eliminating $4 billion dollars in oil company “benefits” as a tax increase!  $4 billion dollars a year would provide funding for 100,000 families a year on the waiver or Family Support for 1 million families.   Or on the other hand, protecting oil companies “benefits” could mean $4 billion dollars more in cuts to those same programs.   

This is not politics as usual.  Beyond the spending and revenue picture, the question of the entire US economy and the world economy sits in the balance. 

Will Congress meet in the middle?  That may indeed depend on how you and I respond.  There is still time for us to speak up. 

Call, email, and if possible visit with your member of Congress – soon!  How well we communicate may make the difference – and never doubt that your voice does count.

For complete information on how to contact your members of Congress, visit The Arc of Indiana’s Legislative Action Center.  If  you do not already receive Legislative Memos and Action Alerts – be sure to sign up today!



Put a Face to Proposed Medicaid Changes – Make Your Voice Heard – NOW!

July 6th, 2011 by

Don't Cut Our LifelineThe ongoing debate in Congress on Medicaid puts the future of so many individuals and families at stake. This morning I heard a member of Congress say that it is time for Washington to take a “hit” by getting Medicaid under control.  The real truth is, if Medicaid is block granted or across the board cut are made it will not be Washington that takes a hit.  The hit will be taken by real families and people with disabilities who will lose their life line to critical services and supports. 

The Arc is working hard to put a face to how changes in Medicaid will in fact impact real people. Your voice must be heard.

Mike Carney, Executive Director of KCARC, local chapter of The Arc in Knox County, recently brought self-advocate Ron Devine and his sister Kristy Harting to DC to meet with their congressional delegation as part of a growing effort to make sure congress knows this issue is not just a theoretical discussion but something that affects real people who live in their districts.

Today four families join The Arc’s CEO Peter Berns and Public Policy Director Marty Ford in a meeting with key staff at the White House to share how Medicaid cuts would affect their families – an important discussion and opportunity as President Obama and Congress continue deficit reduction negotiations.

You can do the same thing without traveling to DC.

Call your Senators or Member of the House of Representatives
Call the Capitol Switchboard to reach your Members of Congress: 202-224-3121

Sign Up for The Arc’s Action Alerts
Act quickly when you receive them!

Make an Appointment with your Elected Officials
Call your elected officials for an appointment to discuss what Medicaid means to you. Find out when your Member of the House of Representatives will be home from Washington, and call his or her district office to make an appointment. Stress with the scheduler that you know that budget cuts could come up for a vote this summer, and you want your voice to be heard!

Attend a Town Hall Meeting
When Members of Congress are back in their districts, they often hold town hall meetings. Call their district offices to find out when the next meeting is so that you can attend and share your story directly with your Representative.

Invite your U.S. Senators and Representative to your local chapter of The Arc
Invite them to join you at places or events where they will be able to meet with people with disabilities who depend heavily on Medicaid. For example, invite them to a supported housing setting or apartment supported by your chapter(s). Seeing firsthand the people who depend on Medicaid-funded long-term services and supports can have a powerful effect on Members of Congress and can help to dispel many of the unfortunate misperceptions about the program (for example, that it serves people who don’t really need it). If possible, invite them to a chapter event that’s happening during the recess where they may meet and talk with people who depend on Medicaid for services.

Write a Letter to the Editor
Local newspapers will print letters from local residents on timely topics. Sharing your personal story about how Medicaid is your lifeline to health care and long term services and supports will help people understand why we must maintain the program.

Use Social Media to Spread the Word
Facebook and Twitter are often the first source of news for your friends and family. Use your online network to ask them to get involved in this fight!

Learn More: “Don’t Cut Our Lifeline Medicaid Tool Kit”


But most important – Make Your Voice Heard - Now!



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.



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