After the Storm

March 13th, 2012 by

On Friday, March 2, 2012, tornadoes ravaged at least eleven states including Indiana. The strongest (EF-4) tornado essentially destroyed two small southern Indiana towns, Henryville and Marysville. The photographs of the storm damage show unbelievable devastation – houses left in a pile of ruble amid trees snapped in the middle like toothpicks. As soon as The Arc of Indiana staff began hearing the news, we began wondering about individuals who happen to have I/DD and were concerned about their safety.

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.



2011 Report from The Arc Master Trust

February 8th, 2012 by

As Trust Director for The Arc Master Trust, I am happy to report another strong year for the Trust – which will celebrate its 24th anniversary on October 24th this year.

The Arc of Indiana Master Trust was founded in 1988. Trust I is The Arc of Indiana’s original trust. The intent of Trust I is to provide parents with a reliable way to supplement government benefits their children receive, such as Medicaid and Supplemental Security Income (SSI), when they are no longer there to provide for them.

Trust II was established in 1995 in response to a law passed by Congress in 1993 allowing individuals receiving government benefits to fund their own trust.

In 2011, 44 new people enrolled in Trust I and 201 new people enrolled in Trust II.

As of December 31, 2011 there were 2,084 open trusts with The Arc of Indiana Master Trust.  Of those, 1,405 people are actively receiving distributions from either their Trust I or Trust II accounts. 155 accounts are funded but are not currently receiving distributions, and 524 Trust I accounts have not yet been funded.

Trust I Investments had a positive rate of return in 2011 of +.12%. This fund is conservatively invested and very closely monitored to ensure the safety of our beneficiaries’ trust money. The Arc Master Trust invests beneficiaries’’ money as if they have retired and this is their retirement money.

The following table profiles investments as of December 31, 2011:

Mutual Fund – Int. Government/Bond

$13,052,952

44.38%
Mutual Fund – Large Cap Equity

$ 8,134,607

27.66%
Miscellaneous Cash Equivalents – Taxable

$ 2,451,488

8.33%
Mutual Fund – Foreign Stock

$ 1,926,593

6.55%
Mutual Fund-Small Cap Equity

$ 1,699,903

5.78%
Mutual Fund – Domestic Hybrid

$ 786,344

2.67%
Other   $ 1,360,226

4.63%

The total on deposit at The National Bank of Indianapolis for Trust I and Trust II at December 31, 2011 was $42,814,720.

The Arc Master Trust Team:
Melissa Justice, Trust Director
Brandi Davis, Assistant Trust Director
Katie Batagianis, Trust Account Manager
Tom Ewbank, Senior Trust Officer

The Arc Master Trust Family Advisory Committee
Alan and Phyllis Hamilton, Indianapolis
Sharon Hauss, Bloomington
Kylee Bassett Hope,  Indianapolis
Kevin McDowell, Indianapolis
Greg Smith, Brownsburg
Sara Walker, Indianapolis

Learn More!  Visit us at: www.thearctrust.org



Time for the Little Things

December 20th, 2011 by

Here we are in the midst of the holiday season when everything is bustling around us. Normally I enjoy the gift buying, baking, cards and other holiday traditions. But this year has been different. Like so many families who have kids with disabilities, mental health issues, special healthcare needs, or some combination of all of the above, we’ve had some complications the last several weeks. One of my kiddos has been having an especially difficult time.

So, this Mama has been completely off kilter. Frankly I have found it difficult to find joy in the typical holiday traditions. Sometimes the traditions just seem so small when you have a child who is struggling. And yet, I have been trudging through most of them, determined to keep every ball in the air. I know that Christmas will be here on December 25th, ready or not.

Last weekend, we finally found a time to decorate our Christmas tree. The tree has been a tradition for us with each of our boys having a large box of collected ornaments that they hang. Now that our children are older, they seemed less enthusiastic about this event than in the past - but now that I think about it, perhaps that was a reflection of my own melancholy.

Just before the decorating was complete, Logan found our Peanuts holiday puzzle. Immediately, he wanted to put the puzzle together reminding me that we always do puzzles at Christmas. Every part me wanted to finish the decorating and move on to the next chore that needed completed before the end of the night. But, Logan, who is always determined, definitely had other ideas.

Before I knew it, we were camped out in the dining room sorting border pieces and generally having a great time. And that’s when it hit me – a reminder that this time of year isn’t about the gifts, the baking, the wrapping. It’s the moments we spend together with those we love.

The challenges at our house didn’t magically disappear while working on this puzzle. There weren’t any movie moments like fluffy white snow beginning to fall outside. But this Mama listened to a gentle reminder from my 12 year old boy. This week I’ll be taking the time for the little things that matter – the rest will take care of itself.

Jill Ginn is Manager of The Arc of Indiana’s The Arc Network



New Service for Trust Beneficiaries, Circle of Friends

November 15th, 2011 by

The Arc Master of Indiana Trust has begun a new project, Circle of Friends, in response to a need that has become increasingly apparent to us as we serve our Trust Beneficiaries.

The project has two goals.  The first goal is to help those Beneficiaries that have a funded trust to be able to spend their trust money appropriately.  Occasionally Beneficiaries do not have anyone to contact the trust office to let us know when something is needed and so the trust does not get spent prior to the beneficiary’s death.  It is very important to us that the Beneficiary has access to his or her trust funds to get what he or she wants and needs.

The second goal is for parents who would like to set up a Trust I account to be funded upon their death, but who do not have other family or friends that can be their child’s contact person, again to let us know what he or she wants or needs to be paid from the trust account.

The Circle of Friends project, designed to meet the above goals, will primarily be carried out through volunteers, along with a paid coordinator.  We recently brought on Willaine Sandy to serve as the Coordinator for Circle of Friends.  Willaine first came to The Arc a few years ago as a Family Advocate for  The Arc Network, and is continuing to work with The Arc Network as a Family Advocate Community Specialist.

Initially the project will focus on Indianapolis, Fort Wayne and Evansville.  Once it is established, the goal will be to offer this service across the state.

If you or someone you know is interested in being a Circle of Friends volunteer, please contact me or Willaine Sandy by calling us at 317-977-2375, 800-382-9100 or by email at mjustice@arcind.org or wsandy@arcind.org.

Melissa Justice is the Trust Director of The Arc of Indiana Master Trust



The Arc – Fighting for Lou Ann and for You

October 15th, 2011 by

Have you ever had something happen that you just can’t seem to shake? I watched a video of a father fighting for his daughter with a disability last week and I can’t get his image out of my mind.

If you haven’t done so yet, please watch “One Families Fight for Help. ”

Lou Ann and Her Father

Lou Ann has cerebral palsy. Her parents could have followed the advice of doctors fifty years ago and sent her to an institution but instead they cared for her at home. Now at 89, her father is very ill and needs to move into an assisted living facility. But, neither the Division of Aging or the Division of Disability and Rehabilitative Services will approve an A&D waiver or a DD waiver so that Lou Ann can move into a home with two other women.

It makes me so mad. If Lou Ann had lived in an institution it would have cost the state of Indiana millions of dollars. But her family took care of her. Now when they need and deserve a little help, the state won’t help. The really frustrating part is that moving her into this new home would actually save the state money.

The image that has stuck with me for almost a week now is how tired her father looks. His doctor has ordered him to go into assisted living but he won’t leave his daughter. This fight to get residential services has gone on for months and I’m sure it’s affecting his health.

At The Arc we are working very hard to try and help this family. We have gone to the state. We have helped with appeals. We have promised that we will continue to fight until this issue gets resolved.

I can’t imagine how hard it is on Lou Ann’s father. But I’m really glad that The Arc is here to help.

If you would like to support the work of The Arc so that we can continue to help families in Indiana, please visit us at www.arcind.org.

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



The Arc of Tomorrow – Family Support

September 23rd, 2011 by

I am continuing in my series of blog posts on the various components of The Arc of Tomorrow – a comprehensive plan developed over a two-year period by representatives from nine local chapters of The Arc. Today’s topic - ”Family Support.”   

Although the “Tomorrow” Report was created independent of  the “Building Pathways to Empowerment” campaign and the “Blueprint for Change,” each of the “Tomorrow” components compliments and embraces the ”Blueprint.”  This is certainly true for “Family Support.”

 ”The Arc of Tomorrow” provides a pathway for local chapters to follow in shaping their vision, as chapters, for tomorrow.

In supporting families our local chapters of The Arc must reaffirm The Arc’s relevance and role on behalf of all people with intellectual and developmental disabilities, regardless of diagnoses, at all stages of life, reaching out to empower parents, siblings and other family members to  provide them access to the information they need, when they need it, across multiple media and modalities. Chapters should provide families with information about their rights and provide them the tools and supports to protect their rights. 

Local chapters should have a presence and/or be a resource in all transitions of life, from birth to infant transition to school and from school to adult life and services; and  they should actively involve, organize, collaborate, support, and assist parent/family support groups.

Many of our chapters are achieving all or many of these goals. These  chapters should strive to achieve the following:

  1. Develop a resource network to offer parent to parent mentoring and provide as well as training in effective mentoring
  2. Provide support for students with an IEP, helping the student and family through the process of the development/modification of an IEP including attending case conferences
  3. Support families not currently receiving services by sharing stories of families who are engaged and active, building on natural supports on what can be done while waiting for funded services

If you are a follower of The Arc’s blogs or a frequent reader of  articles on our website you know that much is happening at the state and national level of The Arc. The Arc of the United States has issued The FINDS Report and our Blueprint for Change will be the focus of our conference on November 1. The Arc of Tomorrow report provides a framework for our local chapters to embrace these initiatives and continue to build on our history of being a leading organization that offers guidance and support to families.

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



Recognizing Gifts

August 25th, 2011 by

Recently, a board I am a part of spent the day in a workshop exploring our individual strengths.  Before the meeting we each received a copy of Tom Rath’s Strength Finder 2.0.  We all read the short book and took an online assessment.  The results identified each individual’s top 5 strengths/talents.

The idea behind this book and workshop was to figure out your strengths and talents and then find ways to maximize those talents in your personal and professional life.  This author encourages people to focus on their strengths instead of focusing on improving any possible shortcomings.   I think that most people would agree that finding a career or job that allows you to utilize and even maximize your strengths would likely lead to greater job satisfaction.

Participating in this workshop has lead me to a lot of thinking about the importance of finding everyone’s strengths and talents.  When we think about or interact with individuals who have disabilities, do we remember to focus on their strengths?  More importantly, if we DID focus on maximizing strengths, how much happier could the person be in their daily life?

I thought about this recently when I attended a quarterly meeting with a family.  Quarterly meetings are a lot like case conferences for adults who have disabilities.  A group of people get together to discuss the services and programs in place for an individual who has a disability.    We spent almost the entire time talking about incidents that had happened in the last 3 months.  Then we talked about goals for “John.”  As you might expect, the goals had a lot to do with working to overcome perceived shortcomings.  I can’t help but wonder how much happier John might be if we only focused on the things he is good at and helped him maximize those talents.

This week I am going to leave you with a challenge, whether you are a parent, a professional, a teacher or a sibling:  Figure out the talents of your loved one who happens to have a disability, and then spend more time focusing on that talent(s) than on the individual’s shortcomings.  Find a way to help that person tap into their talent.  I’m pretty sure you will both have a better week.

Jill Ginn is Manager of The Arc of Indiana’s The Arc Network



A Brief Primer on The Arc of Indiana Master Trust II

August 1st, 2011 by

The Arc of Indiana Master Trust II was established in 1995 in response to legislation passed by the United States Congress in 1993.  (In fact, The Arc’s Trust Director at the time, Alan Kemp, was instrumental in working with staff of The Arc US to craft the legislation).

In Indiana, thousands of people have benefited from the law that made  Trust II possible.  People who receive an inheritance, lump sum back-payment from Social Security or lawsuit settlement can put those funds into a Special Needs Trust rather than spending the money quickly just to stay eligible for government benefits. 

The other common reason we establish Trust II accounts is when individuals have too much money at the end of the month.  This is generally from either their Social Security check or from earnings.  Any excess at the end of the month can be put into the trust so that they can remain eligible for Social Security and Medicaid and yet have the money set aside in the trust to use in the future.

There are actually three options if someone has more than the $1,500 they are allowed to have to remain eligible for Medicaid or $2,000 for SSI.

The first option is to spend the money.  The excess funds can be spent, but documentation of the expenditures should be saved.  

The second option is to prepay an indivdual’s funeral and burial expenses.  You can go to your local funeral home and set up what is referred to as an Irrevocable Funeral Trust.  This is generally an insurance policy and will not interfere with the government benefits or count as a resource (as long as it is an Irrevocable Funeral Trust).

The third option is to establish a Special Needs Trust (The Arc Master Trust II).

You can do all of these three things if there is sufficient money and if you have time.  If the person receives Medicaid you only have until the last day of the month in which they received the money or they will lose their Medicaid benefits.  SSI gives you a couple of months to spend the money down to the $2,000 limit.

If you don’t have time to purchase the needed items and/or set up the Irrevocable Funeral Trust, these things will probably be eligible to be paid for out of the Special Needs Trust once it is established.

If you spend part of the money and set up the Irrevocable Funeral Trust be sure to keep the documentation on how you spent the money to show Social Security and Medicaid when they require this information.

The Arc Trust currently has approximately 1,100 persons currently enrolled in Trust II, with a total value of approximately $12 million.

If you would like more information on Trust II, please contact The Arc Trust office at 317-977-2375 or 800-382-9100. The trust’s website has a lot of valuable information: www.thearctrust.org.  

I can always be reached at mjustice@arcind.org - please do not hesitate to contact me!

Melissa Justice is Director of The Arc Master Trust.



Acceptable Risk – My Lesson from the Autism NOW Summit

July 14th, 2011 by

A few weeks ago I had the pleasure of volunteering at the Autism NOW Midwest Regional Summit here in Indianapolis.  My favorite part, along with many other participants, was the breakout sessions where individuals and families were able to tell stories, talk and share their experiences.  My “stand out” moment of the summit occurred at one of these sessions.

For the first half of the session, adults who have disabilities shared their experiences with taking risks.  I heard my friend Melody tell her beautiful story of growing up in the rural south with a loving grandmother but little support or protection at school.  When Melody was a young adult, she bravely took a bus to Indianapolis to live with her beloved Aunt.  Now she has built a life with her husband, Joe, and is currently the president of Self Advocates of Indiana.  Another story was told by Chester, a young gentleman who happens to be blind.  He told of being determined to visit downtown in his community on his own.  He made that trip, but there were moments when he felt scared even though he was determined to succeed.  When his parents ask him how it went, he told them that everything was fine.  He wasn’t about to let his parents know how scared he had been.

Following these stories, conference participants had a chance to make comments and share their thoughts.  I will never forget one mom whose life was changed by listening to these stories about being given a chance to take a risk.  This mom, with tears in her eyes, told of longing for a baby and finally having one at a late age.  Her son faces daily challenges due to an Autism Spectrum Disorder.  She also shared that she had always felt it was her job to do everything she could for her son and always be there to protect him.  And then came the moment  - she turned to Melody, Chester and the others and said, “Thank you.  I now understand that my job is to allow my son to take risks so he can achieve his hopes and dreams.”

Taking risks doesn’t always turn out the way that we would hope.  Sometimes things don’t turn out the way that we planned.  But often we learn the most when we are allowed to take acceptable risks even if we don’t succeed.  As a parent I have been that mom spending so much time and energy trying to make everything okay for my son.  Ultimately, I try to remember what that mother so eloquently shared.  I need to be that parent who helps my son take acceptable risks so that he can learn and work toward his hopes and dreams.  After all, isn’t that what we all want?

Jill Ginn is The Arc of Indiana’s Manager of  The Arc Network



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!



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