Through my 30+ years of involvement with The Arc (yes, I am a “seasoned veteran”) I have always been connected to individuals with intellectual and developmental disabilities, but it was when I was asked to assist SAI that I truly developed a super passion for the many friends that I have made over the years.

I hope self-advocates throughout Indiana have the opportunity to participate in a local self-advocate group and/or Aktion Club. And hopefully that local group is affiliated with SAI, which in turn supports the national self-advocate group SABE (Self Advocates Becoming Empowered). If there isn’t a local self-advocate group or Aktion Club in your community let Melody Cooper, President of SAI, know. SAI is committed to expanding self-advocacy throughout the state.

At the national Arc level a new initiative has been developed to foster the active involvement of individuals with I/DD in the work of The Arc – the National Council of Self-Advocates (NCSA or the “Council”).  Its primary purpose is to empower persons with I/DD to voice their opinions about what is important to them and to ensure that they are afforded the same opportunities as everyone else to have a meaningful life in the community, and there is no cost to join! Members will be able to network with others who are involved in advocacy work, educate the public about the issues that are important to people with I/DD, and become active leaders in their communities.  In addition, the Council will also promote leadership roles for individuals with I/DD in local chapters of The Arc and supporting The Arc’s commitment to employing individuals with I/DD.

Self-advocates who are interested in joining the Council must be members of a local chapter of The Arc, and can join online through The Arc’s website by visiting:  Join the Council.  It is a simple process that we hope others will help self-advocates access if they need assistance.

The NCSA held its first event during the recent Public Policy Seminar of The Arc and Melody Cooper reported that it was a great gathering and an additional way for self-advocates to connect with others. I’m not sure what the future holds for NCSA but I believe it provides another avenue for self-advocates to be engaged.

Mark Kevitt is The Arc of Indiana’s Director of Program Services

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 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 31^st – 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

I noticed that I was leaving for work every morning in a bad mood and crawling into bed at night in that same mood.  It finally dawned on me that it was because of the horrible taste my new toothpaste left in my mouth.

For me it was easy – I went to the store and I bought a different tube.  But what if I was at the mercy of my provider and had to use what I was given?   What would life be like if the smell of your soap or the smell of your clothes bothered you and you were stuck?

We are so lucky to have Self-Advocates of Indiana.   They fight every day to make sure that individuals with disabilities are treated with the respect and dignity that they deserve.   They fight to make sure that everyone has a voice even when that voice is expressed through movements or eye contact or a communication device.

Everyone can express how they feel or what they like.  I wonder how many individuals with disabilities are being treated for “behaviors” when they are only trying to tell someone that the toothpaste they have to use makes them sick.

Every single person on this planet has something to offer and unique gifts.  Everyone has the ability to express themselves if the rest of us only learn to listen without always using our ears.

It took a tube of toothpaste to remind me that no matter how far we have come – we have a long way to go.   I hope one day that The Arc and Self Advocates of Indiana are no longer needed because everyone has the rights that they deserve.

Please support The Arc of Indiana or Self Advocates of Indiana so that this important work can continue.  Donations can be made on our website at www.arcind.org.

Jill Vaught is The Arc’s Director of Organizational Advancement

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

Almost immediately, Shane Spotts, DDRS Director, reached out to The Arc to begin spreading the word that DDRS would be offering emergency assistance to individuals who receive DDRS services. Additionally, The Arc of Indiana implemented a plan to quickly begin trying to find individuals with I/DD, their families and direct support staff who have been impacted by the storm to offer assistance with access to resources and immediate short-term needs.

Our southern Indiana family advocate, Jill Smith, has been doing a wonderful job since the storms hit trying to locate families and individuals who need assistance. Jill is attending community update meetings and visiting with people at emergency food locations to connect with people who need support. Reaching those who may need our help continues to be a challenge as cell phone service was down over the weekend and many people are displaced from their homes.

If you wish to help The Arc of Indiana support those individuals who need help, there are two things you can do. First, please let anyone you may know that The Arc is a source of help and immediate assistance. Anyone who has knowledge of an individual or family, including direct support staff, needing help can leave a message for Jill Smith at 317-224-0276. Jill will call you back as soon as possible and can meet with the individual to provide help. Secondly, if you wish to financially contribute to the short-term immediate needs of people with disabilities affected by the storm, you can simply text “TheArc” to 20222 on your cell phone. A one-time donation of $10 will be added to your mobile phone bill or deducted from your prepaid balance.

The Arc has already been able to assist several individuals who have lost much of what they owned, including one direct support staff person whose husband is in the hospital with injuries. We hope that as communication is restored and word gets out about the availability of assistance, that The Arc of Indiana will be able to help many more individuals and families. I am so proud of the work that Jill Smith is doing in her community. I am so thankful to work for an organization like The Arc that does whatever it takes to get help to those who need it the most.

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

Securities: If the donor has the certificates(s) in his or her possession, ownership transfers to The Arc of Indiana when:

1. the donor delivers by hand the properly endorsed certificate(s) to The Arc, or
2. the envelope(s) containing the properly executed certificate(s) and stock power are postmarked, or
3. for delivery other than by hand or by the U.S. Postal Service, the date on which the completed gift arrives at The Arc office.

Tangible, Intangible, Personal and Real Property: The Arc of Indiana will accept gifts of property, including tangible personal property, intangible personal property, and real property.

Life Income Gifts: Life income gifts are those that provide donors with annual incomes, including trust and annuities.

Charitable Lead Trusts: Agreements by which The Arc of Indiana accepts assets in trust for a specified term of years, during which it receives periodic distributions from the trust. At the expiration of the time period determined by the donor(s), assets are transferred back to the donor(s) and/or beneficiaries specified by the donor(s).

Charitable Remainder Trusts: Agreements that provide distributions to one or more beneficiaries specified by the donor(s). Established during life or at death, the donor (or his or her estate) receives a current income or estate tax deduction and the beneficiaries receive periodic distributions from the trust. When the trust terminates, the remaining trust funds are paid to The Arc of Indiana. Charitable remainder trusts can last either for the life of the income beneficiaries or a specified term.

Real Estate with retained Life Estates: A life estate is a form of deferred gift whereby a donor irrevocably transfers legal ownership of a personal residence or a farm property to The Arc of Indiana but retains the right to live in, on or otherwise use the property for the remainder of his or her life (or for the lives of the donor and his or her spouse or partner) or until such time as the donor or his or her spouse or partner may elect to relinquish or terminate the retained life interest.

Life Insurance: The Arc of Indiana will accept gifts of whole life insurance and term policies.

Bequest: A bequest is a gift made upon the death of a donor to The Arc of Indiana in a donor’s Last Will and Testament or other legally blinding testamentary document. Gifts made via a bequest may be outright or contingent, unrestricted or restricted and may include any item or thing of value.

Retirement Funds: Individuals will be solicited to designate The Arc of Indiana as a beneficiary of retirement funds, where appropriate.

Jill Vaught is The Arc of Indiana’s Director of Organizational Advancement

In fact, 8,275 new members received their copies of the newsletter. These new members, along with the nearly 10,000 members from 2011, learned the latest about The Arc’s Blueprint for Change and read columns by John Dickerson, Executive Director of The Arc and Melody Cooper, President of Self Advocates of Indiana. Members were updated about happenings at the State House, as well as  The Arc’s highlights of 2011. Readers learned about our new Strategic Plan, became knowledgeable about The Arc’s National Sibling Council, and received the latest information from the Autism NOW Center.  Both newsletters featured articles on Election 2012.

In all, members were provided twenty pages of information and stories about The Arc, events, happenings and features on individuals with intellectual disabilities and their families.

Some may say that the printed newsletter is outdated – so yesterday (or many yesterdays ago). Yet it is the vehicle that connects every member with our state and national organizations. Every member is different and while I’m sure some won’t take the time to read the many articles, for those who do they’ll learn about Ron, Andrea, Shawn, Martha, Bailey, Rob and others.

I hope that as those of you who are members of The Arc read these stories, you take pride in knowing that you are part of an organization that has for more than 55 years advocated for individuals and families, and that the stories in the newsletter are just a few examples of how our members are so very important in the lives of many people.

If you are not a member, The Arc and its chapters are still conducting our membership campaign and it’s not too late to join. Our goal is for 10,000 members to join and we are at 83% of the goal. Our membership drive efforts will continue through March Disability Awareness Month.

And as a member you’ll receive the quarterly state and national newsletters.  I often hear people say that they only receive junk mail. I hope you take the time to read the articles in our newsletters; you’ll easily see that these newsletters are not junk.

I hope you will join us as we are Building Pathways with Membership. And if you are a member please ask your relatives, friends, neighbors and co-workers to join The Arc. Contact a local chapter or join online.

Members receive benefits such as the newsletters, but the greater benefits are the support members provide to our local chapters; and while your membership supports our efforts, in all likelihood you will feel that you benefit more from knowing that your support is helping someone like Fred and his friend and advocate Mark (a story shared on page 10 of the most recent issue of The Arc News in Indiana.).If you’d like a copy of our newsletter, email me at mkevitt@arcind.org and read firsthand what our members are reading.

Mark Kevitt is The Arc of Indiana’s Director of Program Services