In April I wrote about The Arc of Indiana’s upcoming “We Are The Arc” visits to our chapters. The visits have been made and the numbers are in …

2, 500 miles traveled …. 41 chapters of The Arc visited, plus an additional 11 organizations … 1,000 individuals participating … 56 photos on Facebook … and 12 staff members of The Arc driving Hoosier highways.

On behalf of my colleagues I thank all of our chapters for rolling out the welcome mat.

I visited 14 chapters, some small and some large. Chapters that are service providers and others that are advocacy-only chapters of The Arc. While we had some formal remarks at each of our stops, including presenting The Arc’s Pathways To Employment film series on DVD for local use, I really enjoyed learning what our chapters are doing.

And doing things they are! And by learning what is happening locally we’ll be able to share with others ideas and activities to enhance the work of The Arc.

One idea generated and well received was having a way to connect all of our smaller advocacy-only chapters. These chapters (for the most part) without staff are doing some amazing things in their community. In the months ahead The Arc will be unveiling some new plans to help serve and support these chapters.

And during our visits we visited with many chapter leaders – paid staff and key volunteers. Our chapter gathering in Posey County (which included a great meal at the Red Geranium Restaurant in New Harmony) included the election of new officers (welcome President Misty Weir) as two particular “veteran leaders, ” Melva  Englebright and Jeanie Yancy passing the torch. But Melva and Jeanie stated they weren’t going away and would continue on the board.

Posey County ARC

Posey County ARC

It’s the dedication and leadership of people like Melva, Jeanie and the many more we visited with that makes me appreciate our organization and the leaders in communities throughout the country that advocate for individuals with intellectual and developmental disabilities and their families.

Sadly, there comes a time when we must say goodbye to some. We’ve lost several wonderful advocates recently, Lloyd Crowe, Nanette Whightsell and Karen Staley.

Lloyd was a longtime leader of The Arc of Tippecanoe and the Immediate Past President of The Arc of Indiana.

Nanette, a member of her local chapters many years ago, became the voice and face of our efforts of not only moving people from Indiana institutions, but also advocating for and working with families as their sons/daughters moved into the community.

And Karen, a dear friend from Oregon, served her local and state chapter and was a President of The Arc of the US.

I shall miss these friends and our movement will most definitely miss their advocacy. I shall always cherish their friendship and admire and respect their work and accomplishments.

Often it takes the loss of someone before the accolades come forth. Sometimes we should say in the present “thank you” to those who are still with us. I met many folks on my travels who contribute to our organization. And while I can’t possibly name everyone, nor do I know everyone’s name, I do thank all of them for the work they do in the community.

Since my early days as a volunteer I learned this organization and the people involved are special. I thank all of you. And many thanks, in particular, to Melva and Jeanie.

We are all indeed The Arc.




Mel_Rep BucshonMy experience at this year’s Disability Policy Seminar was very good, just to see people come together for a very good time. It is very good just to sit and learn and listen about all the discussions and things going on across the country. Being in DC is also very good. I look forward to going each year. It is a very good experience for anyone who has never been there.

What did I learn? I learned that it is good for people with disabilities to come together from all over the country to be able to talk about the issues. My favorite speaker was Andy Imparato, Senior Policy and Disability Policy Director. He was very good. It was also good to see a lot of self-advocates there. On Tuesday, there was a meet and greet with just the self-advocates, so we could talk about the issues affecting each state. Other states are talking about employment, just like Indiana.

On Wednesday, we had a day on Capitol Hill, meeting with legislators. The group I was with met with the offices of Senator Coats, Representative Carson and Representative Bucshon. It was good to be there and talk to their staff. We talked about Social Security, Medicaid, the ABLE Act (something to help people with disabilities and their families save money for the future), employment, and more. It was really good to talk with them. We told them about how the issues affect people with disabilities.

It felt awesome to be able to walk around Capitol Hill and meet with staff. It is important for us—especially as people with disabilities—to talk and tell our stories and how we feel about the issues affecting us in Indiana. I look forward to going every year.

If you weren’t able to be there, you need to go someday. But if you can’t go, you can still talk to your Indiana legislators—write them, call them, visit them in their local office. You don’t have to go to DC to have your voice be heard. Need help contacting your legislator? Visit http://district.iga.in.gov/DistrictLookup/ to find out who they are. And you can always call me to help, 317-977-2375.

Our voice counts, whether you are in Indiana or visiting DC.

Melody Cooper is Self-Advocates of Indiana’s President & The Arc of Indiana Employment Advocate. 




We are The Arc

Two years ago The Arc of Indiana completed a three day blitz around the state, visiting our local chapters of The Arc and several service providers. Staff traveled more than 2,000 Hoosier miles – meeting more than 1,000 members, volunteers, chapter leaders, self advocates and staff.

The visits provided an opportunity to connect with our chapters and, for some, provide an opportunity to learn about The Arc.

Many times in the past two years staff here at The Arc have talked about our travels and indicated the desire to do it again. Yet the schedule has never quite worked.

I’m happy to announce that staff will again be traveling to 46 locations throughout Indiana on April 29, 30 and May 1 as we share with everyone we meet that “We are The Arc.”

The “We” means everyone, not just the staff from The Arc of Indiana. “We are The Arc” includes our 20,000 members statewide, 43 local chapters, a growing number of groups and businesses that are joining The Arc of Indiana as Organizational Members, the individuals and families served by chapters, and the staff and volunteers of our chapters.

Spring is often a time of re-awakening and enthusiasm and “We are The Arc” is the opportunity to thank all in our family network for the great job, often in challenging times, everyone and every organization does.  For me, personally, I enjoy visiting friends, meeting new ones and seeing firsthand all the great work our chapters are doing.

“We are The Arc”

 

Evansville_ARC Four_Rivers_Arcs Stone_Belt_Arc The_Arc-of_Johnson_County_1

“We are The Arc”  Events, 2011
Evansville ARC, Four Rivers Resource Services, Stone Belt Arc,
Johnson County Arc/Gateway Services




Family

Why are we so mean to each other?  It seems like every day in the news there are more and more stories of cruelty, violence, abuse, and things that are just plain wrong.     What is it going to take before we will all stop what we are doing and begin to treat each other with the respect and dignity that each and every one of us deserves?

Please don’t misunderstand what I’m about to say.  Events like the one at the Boston Marathon are tragic and deserve the coverage and attention they receive.  However, every day in this country children are afraid to go to school and nothing is done.  People with disabilities are laughed at and it’s not on the news.  Parents mistreat their children.  School kids mistreat each other.  Authority figures misuse their power.

Yes we need to stop terrorism and large scale acts of violence but we also need to stop being mean to each other.  I can’t help but think it’s all connected.   When someone decides to pick up a gun and shoot innocent children, I ask myself what happened to them growing up that pushed them to that decision.  Would they have made a different decision if they had a friend to turn to?

It starts with children on the playground.  It starts with adult role models.  It’s not ok to ever make fun of someone.  It’s not ok to duct tape a little girl’s shoes to her feet.  It’s not ok to post mean things about someone on Facebook.  It’s just not ok!

The past few weeks have caused me to take a look at myself in the mirror.  I don’t deliberately mistreat anyone.  However, there are things that I can do that might help.  I’m trying to be more patient with other drivers on the interstate.  I’m trying to be kinder to cashiers.  I’m trying to remind myself that I never know what someone is going through that may be causing them to be rude or short or difficult.  It never hurts to be nice and it just might help.

The bottom line is each and every person regardless of their ability, their race, their religion, etc., is important.  Each and every person has something to offer.  Each and every person is valuable.

The Arc of Indiana was supportive of the bullying bill and seclusion and restraint legislation that now wait for the Governor’s signature.  Moreover, The Arc of Indiana supports treating everyone with respect and dignity.  I’m so thankful that I get to work for this organization.

photo by: left-hand



Autism Awareness Month

When the new edition of the Diagnostic Statistical Manual (DSM), used by medical professionals, government agencies and insurers, is released in May, it will include changes to definitions of  certain disorders on the autism spectrum.  There has been much talk about what this will mean to individuals and their families when it comes to obtaining a diagnosis and receiving services.

This April, during Autism Awareness Month, The Arc invites you to help raise awareness about what autism really means. What’s your definition of autism? What does the word “autism” really mean to you on a personal and individual level?

If you are not already familiar with Autism NOW, The National Autism Resource & Information Center, visit www.autismnow.org for a wealth of high-quality, reliable information designed specifically individuals on the autism spectrum or with other developmental disabilities, their families and others who care about them. Autism NOW is a project of The Arc funded in part by the Administration on Intellectual and Developmental Disabilities.

And, here’s how YOU can participate in furthering the conversation during Autism Awareness Month – be sure to jump in with your thoughts and feelings on what the definition of autism is to you and share with everyone you know using the hashtag #AutismAware:




Boy painting

The Arc of Indiana is participating with a new task force that is studying the process for Medicaid funded group homes to convert to residential programs funded through a Medicaid Waiver.

The task force includes family members, self-advocates and providers.

The goal of the task force is to bring all parties together to monitor the conversion process and work to find the most effective way to improve Indiana’s system for residential services.

The Indiana Family and Social Services Administration (FSSA) has initiated the statewide conversion of most group homes to waiver funding and is assisting providers with the conversion process by offering grants to agencies that apply.

The conversion of most group home is to be completed by September 2015.

To learn more, please read our updated “Group Home to Home and Community Based Waivers Transition Initiative” position statement.




searching

A few days ago I read this wonderful blog, Our College Tour, from a mom looking for adult services for her son that will start him on his journey to independence.

It made me think of all the stories of so many Hoosier families that are starting that journey right now.  Each month approximately 200 people statewide are starting services through the Family Supports Medicaid Waiver – over 2,000 could begin this journey this year.  Many will be students leaving high school, just like this mom’s son.

How will families and people with disabilities view providers in Indiana when they begin seeking services? It is a daunting task for families to figure out. This mom’s story is helpful.  Hope you will share it and pass it along.




Ryan
As we reach the half way point of the Indiana legislative session, I find myself being more optimistic than ever.

The House Republican Caucus put forth their version of the two-year state biennial budget and guess what, it includes having people with intellectual and  developmental disabilities playing a major role in building a stronger and better Indiana.

The budget bill, as passed out of the House, includes a strong investment in vocational rehabilitation services – an investment that will help more people with disabilities get salaried, tax paying jobs. Is VR a perfect system? Many say no; but we need to keep our efforts focused on keeping Indiana a “Work First” state.

Also included in the budget is a major investment from the state in getting people with disabilities job training in the hospitality industry.  It is the largest growing industry in the nation and in Indiana it is growing in a major way. The Arc is pursuing building a hospitality training institute in Muncie to provide people with disabilities a great opportunity to learn job skills, receive hands-on training, improve their quality of life and decrease their dependence on public assistance.

Key leaders in the Indiana General Assembly are getting it. They now agree that employing people with disabilities is “Good for Business, Good for People and Good for the Economy.”

It feels good being optimistic!




House sign made from hands on nature background

An important issue being considered by the General Assembly is how Indiana will respond to the Affordable Care Act (ACA), including whether or not Indiana will expand Medicaid.  Tied to this debate is the issue of Medicaid Managed Care.  HB 1591 is the bill that is currently being considered as a vehicle to debate issues related to the ACA.  The Arc of Indiana offered testimony on the bill in the House Health Committee on February 13.  The bill passed out of the committee and now moves to House Ways and Means.  Following are key concepts shared in The Arc’s testimony.  To keep up-to-date on the progress of this and other key issues The Arc is following, be sure to sign up to receive legislative memos and action alerts by visiting our legislative action center.

Medicaid Expansion
Medicaid expansion will allow more people with disabilities to work and not be concerned about losing health care benefits.  Nearly 80% of people with disabilities are unemployed.  Being able to work, but maintain Medicaid coverage for health benefits, will benefit the quality of life of people with disabilities and the communities in which they live.

Secondly, expansion will greatly help working families who have a child with a disability and earn too much to be eligible for Medicaid.  They may currently be uninsured because their employer does not offer benefits, they work multiple part-time jobs, or they earn too little to be able to afford family health care coverage.  Providing coverage for their child with a disability will give the child access to critical therapies and health care services that will not only help the family financially, but will also start their child on the road towards health and independence as an adult.

A recent study released by the Indiana Hospital Association dramatically points out the gains that could be realized to Indiana’s economy by moving forward with Medicaid expansion.  There are costs and risks, but the gains to our economy are significant.  And for people with disabilities as with all Hoosiers, a growing economy is the number one issue that will help build a better Indiana – for all.

Managed Care
A key to managed care – an area The Arc believes must be addressed in a thoughtful way – is the contract itself with the MCO(s).   The direction established in the bill is important in that it focuses on quality health care outcomes and the use of home and community-based supports to the greatest extent possible.

No state has successfully developed a managed care plan for people who utilize long-term care services.  This would include people with developmental disabilities who live in group homes or who receive residential services funded through a Medicaid Waiver. For some people with disabilities who rely on long-term care this could mean 40-50 years of managed care.

Indiana must engage individuals in a shared savings concept that incentivizes the wise use of resources by consumers, and provide MCO(s) with the ability to transform care delivery by utilizing the knowledge of those who have the experience to know what actions will best lead to positive outcomes for people with disabilities. Integrating quality health care for this population is essential. The benefit package must be responsibly developed to reflect the diverse populations that will be served and include a range of preventative and wellness services.  Without such services, consumers will be forced to continue to rely on emergency room care, at a great cost to the state and at great detriment to the consumers’ health.

Many people with disabilities are struggling to maintain good health.  If structured correctly, a well run managed care program can provide improved disease management outcomes.  For example, many people with developmental disabilities have diabetes, but many are undiagnosed because their symptoms are attributed to something else – such as a man who keeps getting behavioral health services for “mood swings and unpredictable behavior” only to have someone finally test his blood sugar and realize he has diabetes.

Any contract with a MCO must have meaningful involvement with consumers, families and community agencies that have experience in serving this population.  If this becomes another disconnected bureaucracy that only just says “no”, we will not see better health care outcomes or lower costs.

The MCO(s) have to address adequate payment for services needed by consumers and the workforce needed to support them.  The Kaiser Commission on Medicaid states that establishing capitation rates for services provided to persons with disabilities poses special challenges and stresses that rates must be structured in a way that recruits strong provider networks.  Issues that must be taken into account include accommodations to make services accessible to people with a range of disabilities, an integration of behavioral and physical health, and coordinating acute and long-term service.  Because many providers lack experience in meeting the needs of people with developmental disabilities, involving community-based organizations that have worked with this population for years is absolutely essential.  While we believe it can be done, it must be done thoughtfully and carefully.

Another key consideration must be addressing outcome measures from the perspective of consumers, who must be engaged in the planning, monitoring and implementation of any managed care plan. For example if I have cerebral palsy and little control over my body, my doctor will need a specialized table to provide a proper exam.  Many people with disabilities do not receive basic preventative health care, such as pap smears, mammograms, or prostate screenings, because exam rooms and equipment cannot accommodate their disability.  A specific example is a woman in southern Indiana who was not diagnosed with breast cancer until it was in its late stages.  There was not an accessible mammogram machine in her area to accommodate screening her from a wheelchair, so she even though she was of an appropriate age and risk factor she never received the screenings other woman her age would routinely receive.

Strong state oversight is also essential to any managed care plan that is put in place for at risk populations.  Several states have developed “secret shopper” programs to measure access and quality.  Adequate state staff capacity and resources to conduct these operations and enforce standards are fundamental.

The Arc strongly supports studying the experience of other states regarding managed care, and welcomes the opportunity to participate in that process.  Iowa has 12 years of data on how community agencies enhanced service coordination, leading to improved outcomes and lower overall costs – including hospitalizations and incarcerations.

Key decisions that the state will need to make in implementing a managed care model will include:

  • Opting for a statewide rollout or pilot demonstrations
  • Creating competition or collaboration incentives
  • Establishing statewide or regional entities

Once these decisions are made transition plans should be put into places to allow consumers to use their existing health care providers for a period of time as new provider networks are developed.  Networks should include all willing and qualified providers so that the network reflects the diverse needs of people in communities across the state and brings in providers who have a history of serving at risk populations.

The establishment of any managed care plan must also be extremely mindful of the importance of creating a program that does not create roadblocks and disincentives to moving people from unemployment to employment.

As the issues of Medicaid expansion and managed care continue to move forward, please do not hesitate to us at thearc@arcind.org or 317-977-2375 with any questions, comments or concerns.




I’ve always loved working for The Arc of Indiana but I have to say I’m more excited right now than I ever have been.  2013 is going to be a great year.   This week we have been finalizing the calendar and I can’t wait.

We have two news things to look forward to in 2013. Beginning in February, we will be raffling The Arc’s 1956 Chevy that has been touring the state since our 50th anniversary in 2006.  We will sell tickets until the fall and a very lucky someone will get to take home this classic piece of Arc history when his or her ticket is drawn.  Details and tickets will be available very soon.

We are also introducing a new fund raising event this year “Indy Cooks for The Arc of Indiana.”  On October 12, 100 Indiana celebrities will prepare their specialty for guests to enjoy.   I can’t give away a lot of information yet but the evening will include a live band and dancing, an auction and a lot of fun surprises.  There might even be a chance to ride in an Indy car!  Watch our website and Facebook page for information and a list of chefs in the upcoming weeks.

Favorites will also be back again this year starting on February 14 with our Valentine’s Day event at the State House.  Every year we ask our chapters and volunteers to make Valentine’s Day cards for their local legislators and then come to the State House to deliver them.    It’s so important that each and every elected official knows that the decisions they make effect real human beings and that they have a face to put with the issues.

Steve Green’s 24th Annual Golf Tournament to benefit The Arc is scheduled for June 21.  If you haven’t played before, this is a really great day of golf, fun and friendship.   We play at the Eagle Creek Golf Club on the northwest side of Indianapolis.  Watch for information in our next newsletter.

The Golf Ball Bounce will also be taking place that day.  At 11:45 we will be dropping up to 1,000 numbered golf balls onto a mark hole at Eagle Creek.  If you have the number of the ball that lands closest to the hole, you win $1,000.  The second closest wins $500, the third $250 and the ball that lands the farthest away wins $250.  Tickets will go on sale March 1.

Food  Fest will be back on Monument Circle on August 23.  We will close the circle and celebrate disabilities and all of the things that make each of us unique.  A variety of food trucks will be available that day with a portion of each sale benefiting The Arc.   Last year we had music, Boomer and a lot of fun. And this year promises to be bigger and better.  If you didn’t make it out last year, be sure to mark your calendar.

Self-Advocates of Indiana will hold their annual picnic on July 19Our annual state conference is scheduled for November 6.   The Arc US national conference is August 2 – 5.  The list goes on and on.

Check our website often, read the weekly e-newsletter and quarterly newsletter and be sure to follow us on Facebook and Twitter.   You don’t want to miss any of the fun.  Check out the list below for ways to stay connected with us through out the year!

Jill Vaught is The Arc’s Director of Organizational Advancement