State of The Arc - Presented by Board President Helen Pietranczyk at the 2019 Annual Meeting

Good evening, and thank you all for being here tonight.

This is my opportunity to share with you the accomplishments of the past year, the things we are most proud of. There is so much good work being done here, as always, that it would be impossible to tell you everything. But what I can do is give you a flavor, a taste, of what’s been done to support and change the lives of the people we serve.

Before we dive in to this, I wanted to take a minute to be sure that some terminology is clear. Advocate…advocacy…self-advocate….we toss the term advocate around, and assume that everyone understands it. An advocate is a defender, a supporter, a champion, a counselor…that’s right from the thesaurus. And while its correct, there is so much more to it. Our advocates listen, clarify to understand, talk to all involved, and then offer solutions. Our advocates are subject matter experts, knowledgeable and experienced, and most importantly, passionate about the work that they do. And just because someone on staff here does not have the word advocate in their title, doesn’t mean that they aren’t an advocate in their heart. Everyone here is an advocate for the individuals we serve.

This is the time where I usually start talking numbers, to share how many individuals and families received information and/or support this past year. Overall, the number of individuals and families receiving services increased significantly this past year. But rather than focus on the numbers, I think it’s most important that you understand that once someone contacts The Arc for services, an advocate takes the case, and begins the process of providing the assistance necessary. The complexity…which directly impacts the number of hours needed to provide the support…. increased as well.

I can’t stress enough, how complicated and challenging advocacy cases are, so I’d like to share a couple of real-life stories, to paint a picture of the kind of work that these dedicated advocates do every day. The individual’s names have been changed to protect their privacy.

Dorothy, a 55-year-old woman with Down syndrome, needed support as did her family; she lost her father two years ago, and then an uncle this past year; she was still in the midst of processing her grief, which is very difficult for many of the individuals we support. Unfortunately, grief therapy is not often available, because of Medicaid restrictions.  Then this year, Dorothy’s health started to deteriorate; within 30 days, she went through a revision of her Supports Intensity Scale (SIS) assessment, which would permit her to receive additional services. She then experienced a stroke, aspiration pneumonia while in the hospital, and then a gall bladder attack, all of which contributed to her not being able to remain at home.  Dorothy was re-hospitalized, went from ICU to inpatient hospice, and then passed away. Our advocate not only supported her through all of these issues, but her family as well, and that support continued even after she passed away.

The Arc talks about providing support “birth to end of life”; can you imagine what this woman, and her family, would have experienced if not for The Arc advocate’s knowledge and support….  Our Adult Advocacy team, Jeanne, Breanna, and Emily work hard to ensure that people get the support they need in the most difficult of circumstances.

Our Education and Family advocates face significant and complex issues as well. This team of three, Patricia, Corinne and Sally, helps families navigate the challenges of obtaining an appropriate and fulfilling education for every student, even when there is a lack of understanding about what that means. Even when the family is homeless, these advocates support the family, and the student.

One of our advocates has worked with a young woman with very complicated medical and behavioral needs since she was 5 years old (she is now 14).

  • She has a dual diagnosis of both IDD and behavioral issues, exacerbated by various medications she takes to control her seizures.
  • Autism has just recently been added to her diagnosis.
  • The family is now homeless, living temporarily with mom’s brother, who can no longer handle his niece’s behavioral issues, and has asked them to leave.
  • She is hospitalized frequently, but due to the constraints of Medicaid, she is limited as to the length and frequency of her stays at Children’s Hospital. So she gets short term help, but not always the long term medical help that she needs.
  • School placement has always been a challenge. The advocate works with the school team to ensure access to school services and learning even though she continues to be suspended, hospitalized and moved from placement to placement. She will be going into high school next year and the advocate is working hard to ensure the right situation with proper supports and services.

I would be remiss if I didn’t mention two other aspects of the great work that these dedicated advocates do…training and systems navigation. I speak to this every year, and this year, we are pleased to announce the implementation of the The Arc’s IEP online self-guided training and videos, available on our website. This online resource is available to everyone, and explains the IEP, the process, and most importantly, the rights of students and their families, in easy to understand terms.  

In addition, the always changing systems that provide the backbone of support for individuals with IDD, have…guess what…changed again, requiring significant effort by all of the advocates to understand the changes so that they can “translate” them to the individuals and families they support.

And last but not least, the advocacy team and our executive director have been involved in the development of the Family Justice Center, now officially named PorchLight. This concept puts all of the resources together, under one roof, so that victims of all kinds of abuse and exploitation have just one place to come, not only to report what has happened, but most importantly, to get access to all the services necessary to support them, from filing charges, to ensuring their basic safety, right through the healing process. The Arc’s involvement ensures that individuals with IDD who are victims receive the same essential services through PorchLight as everyone else. It’s been an incredible amount of work, but so important, that we have a seat at the table during the planning stages, as well as in implementation.  We expect to be onsite when Porchlight opens in the Fall.

In addition to advocacy, you may not be aware of the many other things happening at The Arc and about some significant changes that have taken place over the past year.

The Community Outreach team of Valerie and Brent has been extremely busy, taking every opportunity they can to communicate the “truth” about individuals with IDD. Brent is new to The Arc and brings great energy and experience to his role.  Their LifeAbility series was met with rave reviews, so much so that they will be starting a new series, Teen LifeAbility, designed by and for teens. This program is in the process of being funded; I’m sure you’ve read our newsletter articles about the program. It’s a very exciting opportunity to help teens with all the many challenges, and opportunities, that they face. Our Young Adult advocates will work with the Outreach team in the development and execution of this new program.

In addition, they spear-headed the state-wide “Learn the Truth” series. They led the development of the entire campaign, and many chapters around the state participated as well. This was the first time that the chapters came together around an identical DD Awareness Month theme…and it was created right here! I should also mention that the theme, “Learn the Truth”, was suggested by our chapter’s Outreach Advisory Council, a group of self-advocates dedicated to ensuring that the world “Learns the Truth”!!! If any of our Council members are here, give a wave; thank you!

This team shows the world that individuals with IDD are just like you and me, with successes and challenges, good days and bad, dreams and setbacks, hard work and play, laughter and tears….just like you and me. The more the world gets the opportunity to see that, and understand that, the closer we get to a fully inclusive world for everyone.

Our advocacy team experienced a lot of change this past year. They welcomed Kris, a great advocate with a mental health background, as a new addition to the team, just before Emily was to go on maternity leave. With Emily gone for three months, the challenge was to keep up with the work, and train a new person. Thanks to excellent teamwork on the part of the entire staff, no one went without help.  Shortly after Emily returned, she was given the gift of one of those once-in-a-lifetime opportunities and decided to relocate to New Mexico, where her family lives. Since then, Jilda has been hired to replace Emily. She is a welcome addition to the team bringing systems experience and knowledge and is now in the midst of her training. Turnover is both a challenge and an opportunity, particularly in a small organization like ours, but this team just jumped in and handled it all very, very well.

The Development team of Jennifer and Eryn outdid the previous year’s efforts with the Summit of Hope, our primary fundraiser, raising awareness through the fantastic program, and raising $91,669. This is an 8% increase over last year. While the program, and the logistics, was ultimately their responsibility, the entire staff helped make it a huge success.

In addition, the development team has been, and still is, focused on moving the organization forward with new and different ways to get the message out, and to raise much needed money. The micro campaign for the Teen LifeAbility series is an example of the kind of resource opportunity we will see more of in the future. Of course, that’s not all that the Development team has been working on; as the world around us changes, all aspects of the organization need to adapt and change as well.

Our coordinator Courtney continues to be hard at work supporting the advocates, and the rest of the staff, with the many details necessary to fulfill the organization’s mission. In addition, she is now involved in handling our social media efforts, a significant piece of the pie, so to speak, when it comes to both sharing our “truth” and developing resources. Courtney is always busy, usually behind the scenes, helping create memorable experiences for us all…

Long time staff member Genni Williams left the organization in November to pursue another opportunity, and our Executive Director took that opportunity to reorganize for the future, and created three new positions.

This would be a good time to recognize the three promotions that have recently taken place; Valerie Smith is the new Communications and Outreach Director.  Eryn Hoerig is the new CRM and Events Manager and Jennifer Holan was promoted to Director of Development. Congratulations to Val, Eryn and Jen!

There is an additional position, Communications Coordinator and Storyteller that is in the process of being filled.

There is a lot for The Arc to be proud of; their leadership in this field continues to shine. This chapter is held in very high regard within the state, and nationally, so let’s give them all a hand….

Thank you for your time, the time to be here tonight, and your support of The Arc.

Thank You To Our 2019 Summit of Hope Sponsors

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