There was some good news and news that is not at all good this week.   The bit of good news came in the latest revenue report, showing that state revenue may exceeded the revised budget forcast for the third month in a row.  This is encouraging; however, state revenue is still below the original forcast that the two-year budget was built on. 

The not good news is that another round of cuts has been made that will be very difficult for Hoosiers with disabilities.  As of July 1, Indiana’s statewide crisis assistance program will shut down.  This important program served well over 1,500 people with developmental disabilities each year - people who were in extreme crisis.  It will be very difficult to keep people facing such a crisis safe without this program. 

The need to address revenue and look at how funds are being spent is why  The Arc has launched the Building Pathways to Empowerment campaign.  The new home page of the Pathways section of our web site  is now live, and there will soon be special sections including ways to share innovations, message boards, the latest news, and a calendar related to Pathways events and meetings.

The loss of the Crisis Assistance Program only underscores the importance of moving forward with the Pathways Campaign.  We encourage you to learn more and to join in this important effort.

As we approach Memorial Day, it is  important to remember those who have given so much to bring the developmental disabilities movement to this point.  It came home so powerfully this week.  

I was privileged to be the speaker for Down Syndrome Indiana’s fourth Tuesday family session at St. Luke’s UMC  in Indianapolis.  And into this meeting came a young family with a two-month old beautiful little girl.  Like any new parents they were so proud of this first addition to their family. Thanks to our wonderful pioneers, before they left the hospital their daughter was enrolled in First Steps - a program The Arc partnered with so many to make sure every baby with a disability in the state can receive early intervention services.  Also before they left the hospital, they were put in touch with Down Syndrome Indiana and made welcome.  And that night they learned about The Arc and our Pathways Campaign.  

None of this would have been possible without the dedicated actions of so many pioneers who have gone before - many who are now no longer with us.  This little girl has a future that is so much brighter because of their work, and yours.     

One of our founders often told the story that the church her family had gone to for years was willing to host one of the first family meetings in the early 50’s; but, they asked this mom to tell parents not to bring their children because they were worried about damage to the church!  As a result that mom moved the meeting and her family to another church!  

We certainly have come a very long way.  And it seems today much of that progress is threatened by an economy and a state budget that is very challenging.  It is going to be a time of great change.  It is our job to make sure that the right changes are made.   

It has been exciting to see the response to our Building Pathways to Empowerment Campaign.  Families, providers and self-advocates have welcomed the opportunity to focus on the future.   

An important part of the Pathways Campaign is the formation of what we call the “Big Minds Group.”  This group, made up of some of the best minds in the disability field from across the country, is already taking part in individual interviews, responding to questions on the possibilities they see for the future.  Soon, you can participate in answering these questions as part of our Pathways website.  (Learn more about the Big Minds Group and plans for the website by listening to the latest A View from My Window audiocast, “A View into an Update on Building Pathways.”  

As you look to the work ahead, remember, someone in the distant future is going to look back with thanks for what you do today and the tremendous difference it is making in their life.   

Wishing you and your family and happy and safe Memorial Day, and remembering all those wonderful pioneers who will live on through their actions that continue to make a difference.

Further state budget cuts were announced yesterday, but how the cuts will be implemented remains unclear.  Governor Daniels has asked all state agencies to reduce their budgets by a total of 15% - this does include the 10% cuts already announced last week that touch many of the programs for people with intellectual and other developmental disabilities.   

At this point, FSSA has indicated they are working to address the additional 5% cut through contract reductions that do not affect individuals or require further rate cuts, but no guarantees can be made. 

6 News in Indianapolis  reported on the impact of budget cuts, including interviews with me and Noble of Indiana - the local chapter of The Arc in Marion and Hamiliton counties.  Take a view minutes to view 6 News’ Kara Kenny’s report. 

This latest news only underscores the importance of The Arc’s Building Pathways to Empowerment Campaign.  A critical piece of that campaign is to put a “face” on the “faceless” impact of budget cuts.  To do that, we need to hear your story.   

This week we hosted a forum on Early Intervention and Education, and heard from Barb Kleist of The Arc of Greater Twin Cities, MN on the importance of telling your story.  Our web site will soon provide a simple way to share your story, upload video and share photos.  We will also have video clips of Barb’s presentation on why sharing your story is so important, and simple tips on how to to share your story in the most effective way.  

The Arc has a long history of making a difference - but only because families and self-advocates can make a very real and personal connection with policy makers on the impact of their decisions.   

Continue to keep up-to-date with our Building Pathways to Empowerment Campaign by checking in on my blog, connecting with us on Facebook, following us on Twitter and signing up to receive our E-Newsletter. You can find quick links to all of these on our web site, www.arcind.org

I look forward to hearing from you, and learning more about your story!

Many years ago, during one of our more trying days at the Indiana General Assembly, I made the trip to Rushville to speak at the Rush County Arc annual dinner.  I must admit on that day I was weary, feeling the weight of the people who did not believe in what we were trying to do.  A moment from that night remains in great clarity with me today.

I was talking with one of our founders, who at that time was just months away from having to move into a nursing home as she was becoming more and more frail.  This woman, who started organizing our movement in 1949, asked me how things were going.  And in a self-indulgent moment I complained about the folks who just did not understand how difficult it was to get legislators to move forward.  She looked at me - all 5 foot 2 inches and probably 95 pounds of her - and gave me a stern look.  She waved her hand around, and said, “Look at all we have accomplished, more than I ever dreamed of!”  Then she looked me square in the eye and said, “John, when do you ever think it was easy.”

That message has stayed with me these many years.  We certainly are in no easy times.  The announcements over the last two days that FSSA is making cuts to funding in Voc. Rehab. and Medicaid Waivers bring more challenges to us.  The economic realities the state faces is making life more challenging for people with disabilities and their families.  Yet, it is important to put things in context.

The $30 million cut from the Medicaid Waiver program is very significant.  But what remains is nearly $470 million dollars a year.  The $12 million cut in the group home program is also significant.  But what remains is just under $400 million.  The overall budget for DDRS this year is over $1 billion and serves 17,500 people.   I remember in the early 80s when we were working hard to establish just 50 new group home beds for the entire state.

These cuts are going to be very difficult to absorb, and as we said in our statement yesterday, we need to find new answers, including eliminating bureaucracy and needless paperwork that adds no value to people’s lives.  But we also have to look to more than just what we have always done.  We are doing this through our Building Pathways to Empowerment campaign.

It has never been easy, and will not be so for a long time, but people are counting on us, both those who have help today, and those facing a waiting list decades long.  Thanks for all you do.

Building Pathways to Empowerment Campaign Taking Shape

For the first time in 18 months, the state’s revenue exceeded the forecast. As an editorial in the Fort Wayne News Sentinel stated:

“Tax collections for March were $908 million, $7 million more than for the same period last year, $2 million above a May 2009 budget forecast and $48 million above a December 2009 revised forecast.  But Indiana officials are right to urge caution in greeting this news, and agencies that have faced severe budget cuts should not be rubbing their hands together in anticipation of the money rolling in.”

“For one thing, March represents another net negative month compared to the budget, and new expenses are always possible. For example, recently passed federal health care reform will immediately cost the state budget $25 million as the federal government takes pharmacy rebates previously going to the state.   And for another, we don’t know yet whether this is the beginning of a new trend or, as state Budget Director Chris Ruhl puts it, an ‘interruption for one month’ of the trend of ‘revenues consistently missing the budget plan and prior year amounts.’”

“Year-to-date collections are still $867 million below the budget forecast last May, the forecast that was used for the current two-year budget. And when that budget expires June 30, 2011, the state is expected to have gone through all or most of the $1.3 billion surplus it started the fiscal year with, despite the hundreds of millions cut from the budget by Gov. Mitch Daniels since it was enacted.”

We are getting so many positive comments on our Building Pathways to Empowerment Campaign and are excited that people are eager to get involved and work toward the goals of redesigning Indiana’s system to meet peoples needs within the new financial realities we all face.

The Arc of Indiana Board has established the Pathways Committee chaired by Laura Vieck of Vincennes whose son Aaron is on the Support Services Waiver.  This committee will be coordinating the overall campaign.

David Mank, Indiana Institute on Disability and Community, has agreed to chair the Big Minds Group, which will bring together the 20 best minds in America to help us answer these key questions.  We are excited that John O’Brien and Connie Lyle, two of the most respected people in the developmental disability field have already agreed to participate.

The communication plan is underway and our chapters have been asked to help us get before community groups like Rotary and Kiwanis to tell our story.  We are already booked in two communities.  Our goal is over 100 presentations between now and November, and in each community we want to do local interviews with radio and newspapers.  

We are also asking chapters to identify parents and self-advocates who will undergo training to speak to other community groups.  If you would like to join that effort contact Mark Kevitt, The Arc of Indiana’s Director of Program Services, at mkevitt@arcind.org.

We have identified key Indiana House and Senate races where we will be making a special effort to education candidates about the importance of what is happening to people with disabilities and their families.

Connie Dillman, CEO Tangram and Kelly Hartman, CEO Insights Consulting have agreed to help us reach out to the provider community to help tell them about the Pathways Campaign and engage people in getting families and self-advocates involved.

And we were very pleased that on March 31 we hosted eight major disability groups and asked them to become partners in the Pathways Campaign.  We already have partners signed up who will be joining others in this effort as Pathways Partners - Advocates.

This is an undertaking like no other in recent times, but we are experiencing challenges unlike any in my 38 years in the field.   I find the support humbling, the challenges daunting, but the people getting involved give me the confidence that this will work.   Thank you and stay in touch.

The response to the announcement of our Building Pathways to Empowerment campaign has been so reinforcing.  The offers of help, both personal and financial, are tremendous.  Families and self-advocates have called and their excitement is contagious!  

A parent who serves on our board shared with me that it is so important for us to get the message out that we are not simply trying to survive this crisis -  we are finding and working towards new ways to thrive

A mother shared with me that she certainly could do with less and would be glad to - but wants to make sure there is less bureaucracy in the system as well.  

Provider response is also positive - providers are ready for change.  At a meeting of  the Indiana Conference of Executive Directors of Arcs, (ICEArc) Directors said that they clearly see the need for change and the value of redefining outcomes to focus on relationships and happiness.  They also see the need to not wait for the state to begin saving money.  One of our chapters has identified that just within their agency over $4 million dollars a year of savings can be made.   

In an interview with a Fort Wayne newspaper yesterday I laid out critical areas where savings can be captured - housemates, sensible approaches to serving people with high costs, and administrative reform to reduce bureaucracy.  We will link you to this article when it runs in the Fort Wayne paper. 

Our goal is get the word out to the general public through at least 100 interviews with newspapers, radio, and television between now and November.  Sally Morris, The Arc’s Assistant Director of Public Relations, is coordinating a new effort with communication staff at our local Arcs.  If you have ideas or want to help, please contact Sally at smorris@arcind.org. Mark Kevitt, The Arc’s Director of Program Services, is serving as our “Campaign Manager.”  Please contact Mark with any ideas or offers to help at mkevitt@arcind.org.

Building pathways to Empowerment

While listening to a news show this morning I had the chance to listen to someone I consider one of the really smart people in the world dealing with our economy, Thomas Freidman, of the New York Times.  He was saying that whether or not health care reform passes, this is the last chance for a very long time for the American people to get a new slice of the pie.  After this debate is over, virtually everything we do is all about building a bigger pie tin that builds our economy.

I think he is absolutely right, and it is something that is at the center of the new effort launched today by The Arc of Indiana.

This economy and the resulting impact it is having on education/special education, health care and programs for people with disabilities, is at a critical crossroads.   We can rail against the cuts and play defense and work to lessen the cuts - which might be successful to a degree - but in the end we are fighting a losing battle and in many ways abandoning people waiting for services who are desperate. 

The Arc is starting out on a new path, one that starts from the premise that we can reinvent what it is we want as a product and what it is that addresses the new realities of today’s economy, while also focusing on the essential and fundamental values of personal choice, individual empowerment and seeking meaningful relationships. Indiana’s service system for adults spends $1 Billion dollars a year - much of it for things people do not feel add value and fall into the category of bureaucracy and paperwork.  We need to streamline, remove barriers and needless buearucracy and allow people to get back to what is best for people.

This change will need to involve what consumers - families and self-advocates- want and need, providers in what they provide, and government in how they deliver, pay for and administer these services.

It is a critical time for Indiana. Perhaps no other time in my career has been so challenging.  But in talking with families, self-advocates and providers in recent weeks, this also can be liberating.  We have always been the visionarys who sought a better way, there is no more better time to do that again than right now, and if not us, who. 

We hope you will join with us. Keep informed through all the electronic ways available on our website.  Join us at meetings we will be organizing around the state. Watch and listen to us on radio shows and television news programs. Read about this campaign in local newspapers.  We will be reaching out and speaking everywhere we can to share this new message.  Thank you for all you do every day.  We look forward to you joining us on this new pathway.