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.

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

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.

One of the great criticisms on the “war on terror” is that we are always planning to stop the last attack  from happening again.  It may be a truism for more than the war on terror.

As the state, advocates, providers and consumers look to use existing funds more efficiently, control costs, redirect resources and, at the same time, work to meet the ever increasing needs of people - we too may be guilty of “stopping the last attack” instead of thinking ahead.

This week the topic of federal deficits is capturing attention, including the possibility of creating a new federal deficit commission. Key to any discussions such a commission has will be the topic of entitlements. We can be certain that they will not be looking to expand entitlements, which consume the overwhelming portion of federal resources, but rather, will likely focus on how such entitlements can be reduced.  Social Security, Medicare and Medicaid are the big three, all of which people with disabilities depend on.

Much has been written about the tea-bagger movement - some praising it and some ridiculing it for the fringe elements involved.  But it may be missed by many that people in the middle are fed up with business as usual and “spending that is out of control.”  People are worried about deficits and what that means for them and their children.  

What brings me to this point?  This week I will spend hours on behalf of people with developmental disabilities and their families working with FSSA on how Medicaid is used to fund very important services through Medicaid Waivers.  Many times I feel the argument is over nickels and dimes. For example, there is currently a great deal of discussion on spending on supported employment, even though it represents only 3/10ths of one percent of the state’s Medicaid Waiver budget.  At the same time, there is little focus on residential services which consumes 90 percent of the budget - using a model developed 20 years ago.  That model depends on a work force of direct support professionals - people who are expected to provide support and care to vulnerable people while adhering to strict compliance to regulations, yet who make so little, many at $8.75 an hour, that they often qualify for food stamps. 

This week I will also take part in a national call to help design a national campaign to end waiting lists throughout the country.  Such an effort will take tremendous resources - particularly if states keep following existing models and systems for providing services.   

Last week, State Senator Luke Kenley told us that to get through these times it will take sacrifice.  He is right, but I do not think he sees sacrifice in the same way I do.

Too often the discussion of sacrifice and entitlements comes back to support for cutting “your” entitlement, but not “mine.”  That thinking will not help anybody. 

We all must work together to get through these difficult economic and political times.  Sacrifice will mean rethinking what we can and must do, breaking old molds and expectations and more wisely investing through the taxes we all pay.

It will not be easy and it will not happen unless politicians begin working together - working not simply to win the next election, but working together for all the people of this country.  

I don’t have much in common with the teabagger crowd, and I am not even sure if the people The Arc represents would be welcome at their rallies.  But I do know that if we do not start really working together, rather than fighting with each other, we will all lose.

The Arc of Indiana appreciates the difficulty of quantifying how many jobs have been saved or created by federal stimulus dollars.  Governor Daniels and Representative Pat Bauer are correct in being cautious to not overstate the impact.  However, while it may be difficult to statistically measure the impact, the positive results of federal stimulus dollars that have gone to stabilize Indiana’s Medicaid program can been seen each and every day.  

Medicaid provides health care to people with disabilities, supports to families caring for loved ones at home and supports to adults with disabilities that allow them to live in their own home.  Medicaid also funds care to people who are elderly or disabled in nursing homes. 

Statistics do not tell the story of the little girl who continues to receive the home nursing care she needs to live at home with Mom and Dad, the young man with Down syndrome and his roommate with cerebral palsy who continue to have support staff that allows them to live in an apartment, or the caregiver who got a paycheck on Friday and will make this month’s mortgage payment.   Read the rest of this entry »

Welcome to The Arc of Indiana’s new web site and blog. We are glad you have found us! 

So, blogging and such. The Arc is excited to find new ways to connect with families, self-advocates and professionals through this new world of “social networking.”

A little over a year ago we took our first step into this new medium by creating The Arc of Indiana’s Facebook page. To do this, I needed to create my own page on Facebook - much to my teenage daughter’s chagrin. While I was skeptical at first, I have found Facebook to be a way not only to connect with old friends, but also a new way to connect with people I know through work. I have particularly enjoyed “Facebooking” with our Arc Network family advocates and self-advocates. Because they work for The Arc throughout the state, I do not have many opportunities to get to know them. Through Facebook I have enjoyed learning more about them and a little more about what goes on in their day to day lives - Renee’s tears of joy when her daughter said, “Mama, mama, mama” for the first time; Jennifer’s adventures in teaching and learning along with her daughter, Gracie; and Jill’s pride when her boys were honored by Junior Achievement - all dressed up and looking fine in their tuxes.

Read the rest of this entry »