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Spotlight: Giving Schools and Students the Tools to Succeed With The Arc of Philadelphia

/in /by Pam Katz

Joe-ManciniAlthough federal laws describe the services and supports available to students with disabilities, it is not always easy for students and parents to advocate on their own for appropriate educational services, so many families seek help from a special education advocate. Chapters of The Arc are well positioned to meet this need. Through advocacy, resources, and training, The Arc of Philadelphia is working hard to improve their local school system and ensure ALL students are set up to succeed. We spoke to the chapter’s Executive Director, Joe Mancini, about the work required to make this effort successful and how others can do the same.

Chapters of The Arc are well-positioned within their communities to make a difference in the education system. Tell us about the work The Arc of Philadelphia is doing in this area.

Our chapter provides educational advocacy for students in Early Intervention Programs through graduation. We serve approximately 80 families in a school year with support during the IEP process and provide countless others with resources. We also provide adult advocacy for individuals above the age of eighteen who are no longer enrolled in school.

Along with our Advocacy Services, The Arc of Philadelphia provides a variety of trainings to individuals, families, and providers on a several different topics. Self-advocacy, the IEP process, ABLE accounts, and tech coaching are some of the many trainings provided through The Arc. The Arc also works with the Philadelphia School district to hold a one-day conference on self-advocacy for transition age students in the district. This conference is free and provides a host of trainings on self-advocacy, technology, healthy living, money management, employment, healthy relationships, and secondary education.

The Arc has built a tech showroom that highlights technology to encourage transition age youth to consider independent living when transitioning from high school. We showcase the technology that would assist this age group to work towards independent living while teaching them the self-advocacy skills to get these goals implemented into their support plans.

How does a successful education advocate balance being a strong supporter to families while also building relationships with the school officials in systems they’re working to improve?

This is a very difficult task. An advocate has to manage achieving the best for the families and individuals we are serving while maintaining a relationship with a school that we will more often than not have to work with again. It starts with remaining professional and not allowing yourself to become emotional when working with all parties. We often see some very upsetting situations when advocating but keeping a steady hand and working professionally through the process will allow us to be seen as a partner and not a punishment to the schools. We must not be seen as biased and ensure that we are at the table to make sure our individuals voice is being heard and that the answers to the best supports do not lie just with the family or just with the school but with the entire team. Our goal as advocates is to work ourselves out of a job by transferring the needed skills to the people we serve. If we do that and allow the meetings to be run by the families, our relationship with the schools has a better chance to remain positive.

You recently completed The Arc@School’s advocacy curriculum training. How has it strengthened your work?

The breath of information we received in this training has increased all members of our team’s overall knowledge or the rights and responsibilities of everyone in the advocacy process. We have a variety of experience levels in our advocacy department and this training has increased the base knowledge of everyone on our team. All members of our team now feel better equipped to serve our families because of the increased knowledge this training brings.

What advice do you have for chapters interested in building a special education advocacy program? Where should they start?

Start with identifying the right members of your team. Finding a staff that has a balance of professional and personal experience is extremely important in building an advocacy team. Equally as important is having the right training for your team. Allowing an individual to shadow an experienced advocate for some time will greatly reduce the learning curve for such a difficult position. Trainings like The Arc’s Advocacy Curriculum will also act as a valuable support for anyone thinking of building an advocacy department at their chapter.

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Nancy Murray From The Arc of Greater Pittsburgh Selected to Serve on National Family Caregiver Council

/in , , /by The Arc

The Arc is honored that Nancy Murray, the President of The Arc of Greater Pittsburgh at ACHIEVA, has been selected by the Administration on Community Living to serve on the RAISE Family Caregiving Advisory Council. Nancy brings a deep personal and professional understanding of the caregiver crisis facing millions of families and people with intellectual and development disabilities (IDD).

Nancy is the mother of two adult children with Down syndrome and has been a caregiver to both of her aging parents. Nancy has also been a powerful voice in the disability field for over 40 years in the areas of family support, advocacy, public policy, supports coordination, and health care. As a member of the Family Caregiving Advisory Council, Nancy will help develop recommendations to the Secretary of the U.S. Department of Health and Human Services (HHS) on effective models of family caregiving and support to caregivers, as well as ways to improve coordination across federal programs.

The Council was established by the RAISE Family Caregivers Act enacted last year to help address the growing national caregiver crisis for family members and persons with IDD, seniors, veterans, and others. This crisis for caregivers is reflected in the findings of The Arc’s Family & Individual Needs for Disability Supports (FINDS) 2017 Survey which shows that nearly two thirds of caregivers surveyed are employed and 45% of respondents provide more than 80 hours of care per week. Not surprisingly, nearly half of FINDS caregivers report feeling “very or extremely stressed.” The findings also underscore the need for accessible respite programs: 92% of caregivers say they have difficulty finding respite care.

We are confident Nancy will help leaders in the federal government find solutions for families. The RAISE Family Caregiving Advisory Council will hold its first meetings on August 28 and August 29, 2019 in Washington, D.C. and will be live streamed.

For more on Nancy’s contributions to the IDD community, please click here.

 

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Perseverance in Planning: The Value of Building an Inclusive Volunteerism Program

/in , , /by The Arc

Building an inclusive volunteering community can be stressful, but it is often incredibly rewarding as well! This year, we asked Erica Delma from Holly Ridge Center to share her journey as a grantee of The Arc’s Martin Luther King, Jr. Day of Service project through a letter to herself. She spoke about finding meaningful work for her clients, the partnerships that blossomed because of volunteering, and the spirit of helping others that has lasted long after the events are over.

Dear 2018 Erica,

I know that the last few months since you applied for the MLK grant have been a roller coaster of emotions. As Development Director of Holly Ridge Center, you are responsible for attracting, growing, and stewarding resources to further the important work the Center does in our community. When the opportunity presented itself to apply for funding to develop inclusive volunteer programs, you thought it was a great match for the Center’s focus on inclusivity and finding people with autism meaningful places in the community. When you realized the focus would be on addressing food insecurity, an issue that you have been passionate about for years, you could not have imagined a better fit. And, one day you got the notice – you got the grant!

I want you know that you are joining a group of people and organizations throughout the country who are equally passionate. And, I want you to know that The Arc staff will be there to help you every day to be successful and navigate challenges.

You will get an opportunity to work with multiple community partners that will blossom into deeper relationships. You will add in even more partnerships with Meals on Wheels, the Kitsap Rescue Mission, and other service organizations.

On MLK Day, you will host a very successful volunteer fair at the Marvin Williams Center. Many people will tell you how eager they are to work with you in the future. The volunteers you support will have more opportunities in the community, and they will be eager and excited to do more and help others.

Thank you for your enthusiasm and energy for connecting the dots to promote inclusivity, volunteerism, the spirit of Dr. Martin Luther King Jr., and addressing food insecurity. There will be work nights and even longer days, but all your hard work will pay off!

Sincerely,
2019 Erica

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Improving Recovery From Sexual Assault With Trauma-Informed Care

/in /by The Arc

Pam and Veronica from The Arc of New Mexico sit together at a table, reviewing a brochure.In communities across the country, a silent epidemic plagues the disability community. People with intellectual and developmental disabilities (IDD) are seven times more likely than the rest of the population to experience sexual violence. Despite this, understanding of how to effectively provide services for people with IDD remains elusive, and survivors often find themselves unable to get the help they need in their communities. Organizations across the country are working to tackle this problem through training, education, and trauma-informed care. The Arc of New Mexico is one such organization, where Chief Executive Officer Veronica Chavez-Neuman and program lead Pamela Stafford are providing victim advocacy services for survivors of sexual assault with IDD and helping build the capacity of their community to respond in an informed, effective, and sensitive way.

What kind of victim services do you provide? How are you making yourself known as a resource to victims with disabilities?

We provide support to access the justice/legal system. We provide support to improve disability informed medical and mental health supports and trauma-informed disability services. We have presented at various conferences and provider forums, posted information on social media, and have had articles written in The New Mexican newspaper. We have also presented at various case management agencies, provider agencies meetings, and community access locations.

What are the steps you take when you become aware that someone with IDD has experienced sexual assault? Who typically reports the incident to you, and does that affect your next steps for addressing it?

It’s difficult to talk about typical when each situation is individually unique. The safety of the individual is always a priority. We get referrals from sexual assault providers, from family members and from self-referrals. The victim /survivor is the decision maker about how they want to proceed and what help they need. We are finding that the services we provide are distinct from other victim advocacy agencies in terms of the variety of supports needed.

How do you train and recruit staff to ensure confidentiality and appropriate response when someone needs help?

In order to assure we have legal privilege in courts, each person who may provide victim advocacy is required to take at least 40 hours of victim advocacy training. This first year in particular has been a very heavy training year. We also contracted with an attorney specifically for this program to help review policies and internal procedures. In terms of recruitment, we debated whether experience with disability or experience with sexual assault was a priority. The person we selected had educational experience with marginalized populations and a strong sense of community justice.

How does this program help the broader criminal justice community (including law enforcement, legal professionals, and victim service agencies) better respond effectively in sexual assault cases? What are some challenges you have faced that other chapters may need to be aware of?

Amanda Thompson, our victim advocate, participates in several sexual assault response teams and a high-risk victims’ task force. Her participation has increased awareness of the IDD population in general. One surprising challenge is how distinct perceptions and even language is between sexual assault providers and disability communities. Even the word “advocacy” means very different things in the two groups. Another surprise was the reluctance of a high school to comply with Title IX regulations in a case within a special needs classroom. The breadth of knowledge to do this job well surprises us daily.

What advice do you have for other chapters looking to build their own technical assistance and referral program for victims of sexual assault? How they can secure funding and build a successful program? 

The primary thing I would do differently is begin with two victim advocates instead of one to build a greater support team due to the emotional toll of the position. I also wish we had spent more time getting to know the players and politics of the sexual assault victim advocacy world in New Mexico prior to implementing the work. Our program is funded with state appropriations from the crime victims reparation commission but there is federal funding as well.

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Spotlight on Grief and Aging: Mark Keeley and Mary Anne Tolliver, St. Louis Arc

/in , /by The Arc

Today, with advances in medical care, deinstitutionalization, and people working and living more productive lives, individuals with IDD are living much longer. Mark Keeley, President and CEO of the St. Louis Arc, recognized the growing needs of this aging population and committed to better serve and support them. Under the leadership of Mary Anne Tolliver, Director of Aging Services, Dautel Circle has become the premier retirement community for seniors with IDD.

Tell us about the grief and loss work that you do at your chapter.

Mark: Many people we support are living well into their 70s and 80s, and are outliving loved ones, including their parents. It is crucial to recognize the losses people with IDD endure across the span of their lives.

Education of staff is paramount to guide them and the people they are supporting through the grief process. The goal is to understand what grief can look like, as it does not look the same from person to person, know how to respond to each individual’s loss, or just “be with them” to listen and provide support. The journey to the end of life can be extended or abrupt. Explaining what to expect through the grieving process and what is occurring can be especially helpful to someone with IDD. Grief counseling also gives individuals with IDD the mechanism to express their loss and sadness.

Since many of the aging individuals we support have declining health and decreases in cognitive and physical abilities, we are changing our supports around them. We have instituted a Holistic Aging Review committee to both meet funder due process responsibilities and provide a holistic review with an interdisciplinary team approach. The committee is designed to provide guidance and recommendations on medical/health concerns, medication review, behavior supports, restrictions, adaptive devices, and staff training for skill development and education. In addition to the review committee, we also provide grief counseling, support groups and hospice, and palliative care.

How do prepare someone with IDD for the news of a loved one being sick or facing a terminal illness? How do you support someone with IDD facing end of life themselves – and how do you support their family?

Mary Anne: The best practice we have found is being honest with the person affected about what is happening to them or to their loved one. We do this through words or pictures to help them understand. When discussing or explaining, it may not always be about a specific ailment or situation, but more about the understanding that their family member, friend, or housemate will no longer be here. We provide grief counseling to residents, staff, and families through our therapist, our Employee Assistance Program, and hospice and palliative care. Understanding their spiritual, religious, and cultural beliefs helps us to guide them through their grief. It is important to not push our own beliefs onto them but be a guide through this journey with their beliefs and understanding of death. We try and make sure the families are involved in decisions, spend quality time with their loved one, and have the opportunity to say goodbye. We also encourage families to include their loved one’s friends and housemates in the process so they can express their feelings and understand their grief.

Do you partner with health care professionals? If so, has the exposure helped build awareness and competency working with the disability community?

Mark: We have a long-term partnership with a primary care physician who consults with our RNs and who also provides care for many of our residents. We have also partnered with Visiting Nurses Association for hospice care for our residents. VNA understands the regulations we need to follow and works with us to provide the best possible care for our residents within their own homes.

What advice do you have for chapters who want to provide aging services/supports, but don’t have a program started yet?

Mary Anne: Aging, loss, and death are a natural process of life. People with IDD grieve the loss of a loved one just as the rest of us do. Providing support, respect, and inclusion in the process of loss and grief and not sheltering someone with IDD from this life experience is vital. Initiating a Holistic Aging Review committee, identifying or employing a reputable, credentialed grief counselor, and educating staff through professional training on aging and dementia is paramount to being able to accommodate these individuals through the natural progression of life and loss.

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Executive Spotlight: Jill Pidcock, The Arc of the Central Mountains

/in , /by The Arc

Jill Pidcock poses for a headshot in a blue collared shirt, with a mottled black background.The Arc of the Central Mountains recently opened their doors to support people through advocacy, outreach, and policy in a rural area of the Colorado mountains. They immediately found themselves in court supporting some of the individuals in their community. One of these cases evolved into providing supports for a young adult who was facing multiple felony charges for stalking and who was in the middle of reapplying for DACA status. The work of The Arc of the Central Mountains has resulted in the creation of a truly community-based support system for this young man, while at the same time building a relationship with a local judicial system, resulting in his four cases being dismissed. In this interview, The Arc of the Central Mountains’s Executive Director Jill Pidcock talks about the about the work the organization is doing and how they are making a positive impact in their community.

How do you connect with the people in this population who need help? Are there any unique challenges to working with this population? If so, what are those challenges and how do you approach them?

Working in a rural area is a major asset in some ways because everyone knows someone who’s willing to contribute. Most often, the people we support come to us through referrals from other families, school districts, and other agencies, like service providers and case management organizations. Our area has a high number of lower income families, Spanish-speaking families, and some undocumented families. Specific to our undocumented families, the children are able to access academics and are supported through IDEA until 21 years old. But at 21, they are unable to access any services or supports through state or federally funded programs.

How did you establish your relationships with your community partners? Did they previously work with the disability community in this context, or have you engaged in educational efforts with them as well?

We first reached out to the extremely supportive public defender and immigration attorney working on our young man’s DACA status. We quickly found ourselves in a courtroom with a compassionate judge and an assistant district attorney who had clearly never had any people-first language training. I took him to lunch and took the time to learn about him and to share the mission of The Arc of the Central Mountains as well as our intentions of finding solutions in our community. By the end of the lunch, he was asking me if we could do outreach and education for the district attorney’s office (perhaps he didn’t want to be left out because the public defender’s office had already requested the same thing).

We also needed to figure out where our young adults could go for assistance and how to get that assistance paid for. One local disability organization has created a Provider Collaborative, which we work with on a regular basis. The collaborative comes together to determine what gaps are preventing a person from living a self-determined, robust, inclusive, community-based life. All of these individuals came up with strategies for supporting this young man.

To pay for these services, we are working with a community foundation providing grants to mental health providers, DVR is funding the job coach (once the DACA status was back in place), Catholic Charities is contributing, and so is a local autism crisis fund. All of these creative funding sources, along with MANY volunteer hours, have come together to create a truly community-based support system.

Your chapter joined The Arc just over a year ago. Have you found the chapter network useful in your work? How have you utilized it to inform and strengthen your efforts?

In our short life span, we have utilized the chapter network countless times. I use my “life line” with the other Colorado chapters whenever we are faced with something needing extra insights. Additionally, we are grateful to have had the opportunity to develop good foundational relationships with The Arc’s national office in its many areas of expertise, from new chapter relations to rights policy. We are equally as delighted to be a part of NCE, as it has proven to be invaluable from a leadership development aspect as well as continual resource and idea sharing through the listserv.

People with disabilities constitute our nation’s largest minority group, which is simultaneously the most inclusive and the most diverse. How can chapters broaden their outreach to be more inclusive of the various identities that make up the community they serve?

We find that getting out into our communities is very important. We create relationships with parent groups, both in person and on social media platforms. We also build relationships with language inclusive organizations, school districts, local banks and foundations, case management and service providers, and human service departments. Building those foundations is where we find our best success in problem solving and collaboration. We are a small office and cannot do it all—we rely on our connections in the community to be successful. Please feel free to reach out directly to explore ideas at Jill@Arccentralmountains.org.

What do you envision for the future of this initiative and the systems being put in place to support it?

We are slated to continue outreach to several of our local police departments as well as continued education to other county district attorneys and public defender’s offices. We are encouraged by the truly collaborative community-based support outcomes that have resulted from our outreach efforts – especially supporting those who may have eligibility challenges accessing services and supports due to ability levels, language, and citizenship.

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Next Stop: Success! Building a Sustainable and Effective Transportation Program

/in , /by The Arc

A TravelMate participant sits on the metro train holding an iPad.

In 2014, The Arc of Northern Virginia collaborated with software partner ONEder to develop the award-winning TravelMate program. TravelMate provides virtual support on a smartphone or tablet, facilitating more independence using the bus, train, and other transportation. By the end of the second year of the program, 96% of users had increased their ability to travel more independently, and nearly half were able to travel completely independently.

How was the TravelMate program born?

In 2013, The Arc of Northern Virginia received a grant from the Federal Transit Administration to develop more travel trainers for individuals with developmental disabilities. There was most certainly a need; at the time there was only one travel trainer at the Washington Metropolitan Area Transit Authority dedicated to working with individuals with developmental disabilities for all of Maryland, D.C. and Virginia. Kymberly DeLoatche was hired to coordinate the project and in her search for a well-liked travel training program, she found that a universal option didn’t exist. Most staff just kind of “did it on their own”. At the same time, Metro had completed a travel training study, and one of the primary insights was that individuals with developmental disabilities took longer to train because they required more repetition of the trip in order to be successful.

A year prior, while Kymberly was attending an Autism Society conference, she noticed an exhibitor who had created an iPad app using real time photos and videos to support an individual with disabilities. She had seen how powerful the iPad could be in the hands of someone with autism and already knew from watching her son, who has Down syndrome that he would watch videos over and over and then get up and perform the action exactly the way it had been done in the video – an “a-ha” moment about how learning uses visual cues.

Putting these two experiences together was the inspiration for the creation of TravelMate. Kymberly called the creator of the software program she saw at the conference and explained her idea about doing an online curriculum that outlines all the steps in taking public transit. ONEder immediately jumped on board and TravelMate was born. It has been a life changing partnership.

Tell us about the community partnership element. What was the process like getting stakeholders and partners on board?

The Arc of Northern Virginia is fortunate to have a wide circle of community partners. When we first recruited individuals to form a Travel Training Project Advisory Board, it was an easy ask. We brought representatives from school districts, the local Community Services Boards, the Department of Aging and Rehabilitative Services, private and public employment providers, and of course parents and individuals with developmental disabilities. Teachers and job coaches guided the development of the curriculum and assessments. Individuals with developmental disabilities were involved in creating and presenting on curriculum, guides, and training programs. Having this level of community involvement from the very beginning is a key element of the continued success of our programs.

What are some secondary effects you’ve seen as a result of the success of the program?

Using visual cues and photos with a touch screen has proven to be a vastly superior format for learning for individuals with developmental disabilities. TravelMate allows each individual to use a format (visual checklist, choice board, social story, or real time photos or videos) that works best for them. The technology also allows them to get the repetition they need to succeed without having to actually perform the task with a job coach or teacher. Working with schools, transition teams, and employment providers in the community provides a more seamless transition for the individuals from school to the work environment. From the very first training program in 2014, we saw school programs adding more curriculum time for travel training and not just “making it up on their own” as they had been doing in the past.

What – if any – are your next steps for expanding the program’s scope or reach?

The Arc of Northern Virginia has already created and launched the companion to TravelMate called EmployMate. It is like having a virtual job coach in your pocket. Because the ONEder platform is 100% customizable to individual needs, a job coach or teacher can go to the employment site as they normally do, create needed activities, monitor performance, and adjust the curriculum accordingly from their laptop.

With the success of these two curricula, The Arc of Northern Virginia’s Tech for Independent Living team is creating additional ‘Mates to address other daily living tasks. In development now are: DailyMate, for daily home living activities; MoneyMate, for budgeting and banking; SocialMate, for navigating personal and professional relationships; and SafetyMate, for navigating interactions with law enforcement and safety tips for home, work and community.

How can other chapters start programs like this in their communities? 

Any chapter could write a grant for funds for training and licenses to start a program like this in their community. We started with using 5310 Mobility funds from the Department of Transportation’s Federal Transit Administration.

Without having to recreate the wheel, other chapters that have employment programs could use our ‘Mates curricula immediately with their current clients. The curricula can be provided directly, or a chapter can use a “train-the-trainer” model as we have done, to engage partners in the community. For any additional information, feel free to email Peter Leisen, Project Coordinator, at pleisen@thearcofnova.org or phone 703-208-1119 ext. 112.

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Spotlight: Kyle Piccola and Ana Martinez Lead Education Efforts at The Arc of Texas

/in /by The Arc

The criminal justice system is filled with gaps in how it navigates and addresses the needs of people with disabilities. In an effort to address this, Kyle Piccola and Ana Martinez are leading education efforts at The Arc of Texas. Utilizing Pathways to Justice®, they are bringing together law enforcement, victim advocates, legal professionals, and others to build relationships and understanding and create safer communities across the state. We chatted with them about the success of the program, how they’ve been able to implement it, and the future of criminal justice reform.

The Arc of Texas group

What made you want to focus on criminal justice reform in Texas? Why did you choose Pathways to Justice as one of the vehicles for your efforts?

ANA: People with IDD experience several disadvantages that make them more vulnerable to becoming involved in the criminal justice system as suspects and victims. A one size fits all approach does not give people with IDD equal and fair treatment when they come into contact with criminal justice system. Texas is a large state with diverse cultural and socio-economic differences. The Pathways to Justice training provides the opportunity for us to bring together police officers, self-advocates, lawyers and judges, victim service providers and community advocates for a training geared towards the needs of that particular community. Our efforts have begun to create systemic change that sparks legislative initiatives and induces a collective and actionable charge for our state.

Can you tell us about what implementing Pathways to Justice has been like for your chapter, and for your community? Did you face any challenges recruiting community partners in law enforcement or victim services, and how did you overcome them?

KYLE: The community wanted and needed this as much as we did! We built a coalition of partners just as fast as we welcomed the program to Texas. Our Pathways to Justice program has strengthened the relationships we have with existing coalition partners and helped us build relationships with new ones. The response has been extremely positive – both from the professional advocates and individuals seeking the training. Our local law enforcement agencies welcomed the opportunity because they understand well that law enforcement agencies are coming into contact with people with IDD more and more. Since our first Pathways to Justice training, The Arc of Texas has been included in all of the Austin Police Department’s training curriculum. For first the time, the Austin Police Department has five hours of IDD specific training for their cadet class.

How has Pathways – along with your other criminal justice advocacy efforts – helped build community awareness of The Arc and its mission?

ANA: Pathways to Justice has vastly raised overall community awareness on the need and desire for people with IDD to be supported in the community. We’ve built relationships with organizations that were only marginally aware of our work and mission. This year we honored the Travis County Mental Health Public Defenders Office and the Austin Police Department as our Community Partners of the Year at our annual Leadership and Legacy Event. Partnering with Austin Police Department and Travis County allowed us to achieve a broader and more meaningful impact.

Why is important for chapters of The Arc to help lead the way on criminal justice reform for people with IDD?

ANA: Once an individual with IDD has a criminal record, success in community life becomes substantially more difficult, especially considering existing barriers in employment, housing, and other basic elements of economic security. An unjustly gained criminal record jeopardizes the capability of an individual with IDD to lead an independent life, and often ends up costing millions in tax dollars to support an individual through institutional social services. Texas still runs 13 institutions where too many people with IDD end up because they were never given the supports needed to secure appropriate criminal justice representation. This barrier to an independent life can be lessened if there is sufficient community awareness and training to identify and support people with IDD, especially when they first come into contact with the law.

What advice would you give to other chapters looking to establish criminal justice initiatives?

KYLE: As soon as people heard that The Arc of Texas was working on issues related to criminal justice, we began to receive a lot of inquiries from self-advocates, families, and advocacy organizations needing support. As your chapter begins to build a criminal justice program, plan for the influx of people needing support. This was not something that I necessarily envisioned having to staff up as quickly as the need arrived.

To bring Pathways to your chapter or find out about other ways to get involved with NCCJD:

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Welcome the New NCE Steering Committee Members

/in /by The Arc

In 2019, the NCE Steering Committee will welcome new leadership and new members. The steering committee serves as NCE’s governing body and is responsible for supporting the development and implementation of a robust professional development program for executives, management staff, and volunteer leaders in The Arc. Please join us in thanking Carrie Hobbs Guiden and the 2017-2018 committee for their time, energy, creativity, and commitment — and please welcome your 2019-2020 committee members:

Chairperson: Karen Shoemaker, Executive Director, The Arc of Lehigh and Northampton Counties, PA

First Vice-Chair: Chris Stewart, President/Chief Executive Officer, The Arc of Central Alabama, AL

Second Vice-Chair: Kim Dodson, Executive Director, The Arc of Indiana, IN

Immediate Past Chair: Carrie Hobbs Guiden, Executive Director, The Arc of Tennessee, TN

Regional Representatives

Region 1: John Nash, Executive Director, The Arc of North Carolina, NC

Region 2: Jean Phelps, Chief Executive Officer, LifeLinks/The Arc of Greater Lowell, MA

Region 3: Lori Opiela, Vice President for Day and Employment Services, United Cerebral Palsy Seguin of Greater Chicago, IL

Region 4: Kevin Fish, Executive Director, The Arc of Sedgwick County, KS

Region 5: Robert Malone, Executive Director, The Arc of Prince George’s County, MD

Region 6: Jon Meyers, State Director, The Arc of Arizona, AZ

At Large Members

Frank Adu, Chief Executive Officer, The Arc Middlesex County, NJ

Leslie Green, Chief Executive Officer, Stonebelt Arc, IN

Teri Hawthorne, Executive Director, The Arc of Greater Beaumont, TX

Mark Keeley, President and CEO, St. Louis Arc, MO

Charity Moore, Executive Director, The Arc of Laramie County, WY

Stanfort Perry, Executive Director, AHRC Nassau County, NY

Melanie Soto, Executive Director, Y.E.S. The Arc, AZ

Mary Van Haneghan, Chief Executive Officer, The Arc of the Capital Area, TX

Regional Key

Region 1: AL, FL, GA, MS, NC, SC

Region 2: CT, MA, ME, NH, NY, RI, VT

Region 3: IA, IL, IN, MI, MN, WI

Region 4: AR, KS, KY, LA, MO, ND, NE, OK, SD, TN, TX, WY

Region 5: DC, DE, MD, NJ, OH, PA, VA, WV

Region 6: AK, AZ, CA, CO, HI, ID, NM, MT, OR, UT, WA

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Spotlight: Farewell to NCE Steering Chair Carrie Hobbs Guiden

/in /by The Arc

After two wonderful years, we bid farewell to Carrie Hobbs Guiden as our NCE Steering Committee Chair. Carrie reflected on her tenure as chair with us, as well as how to get more involved with NCE and take advantage of all that it has to offer!

Your time as NCE steering committee chair is coming to a close after 2 years! What’s your most memorable moment (funny, ridiculous, triumphant, or otherwise) from your time as chair?

The two years have gone by so quickly that it is hard to pick out just one particular moment. I think my most memorable moment as NCE steering committee chair has been handing out the awards at the NCE Awards Luncheon both in San Diego and Nashville. It was such a privilege to meet and honor the amazing leaders in our network and hear their stories. And while this isn’t a specific “moment,” per se, I’ve really cherished the time I’ve spent working with the two Vice Chairs – Karen Shoemaker and Chris Stewart. We’re not only close professionally, but personally as well. We have supported each other through some challenging personal situations that helped us really become a cohesive team.

What was your most challenging moment?

For me the most challenging moment was making the call to tell two steering committee members that they would be rolling off. There is this internal struggle between not wanting to lose that contribution from members that have been extremely passionate, involved and committed but also knowing that the only way to bring new people onto the committee is to allow for that changeover. Change is always difficult for me anyway, but I have found as I get older I can deal with it more effectively.

Do you have any advice for those wanting to get more involved with NCE, either in a leadership or participatory capacity?

Just do it! NCE has many different task groups – events planning, silent auction, awards, chapter resources – that provide opportunities for anyone interested in becoming more involved in NCE to do so without an extensive time commitment. These task groups also give you the opportunity to decide if you want to get more involved and serve on the NCE steering committee. My initial involvement came as an invite to be on what used to be the NCE Membership Committee. For me, being involved in NCE at any level has been a great way to get more connected to the professionals in The Arc network. It is easy to get caught up in the day-to-day that happens in your own state and forget that we have a national network of leaders from which to seek information, learn new ideas, and get support. When I reach out to others in NCE, I often find that they are dealing with similar issues, but in different ways. So I can get a lot of creative ideas from others that I wouldn’t necessarily come across if I didn’t look outside my own state.

What’s next in your career?

I’m not sure. I really enjoy my role as a state chapter exec – but there is always part of me that considers returning to my roots as a provider. I can say with certainty that I always see myself connected to The Arc in some way and working with people with IDD and their families. I just cannot imagine doing anything else. And as long as I am connected to The Arc and people with IDD, I will remain involved in NCE.