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Spreading the Holiday Spirit of Giving With The Arc of Harrisonburg and Rockingham

Now in its second year, The Arc of Harrisonburg and Rockingham’s “Santa Run, Walk, ‘N Roll” brings the community together during the season of giving to raise awareness and funds for the chapter. Capitalizing on the holiday spirit and everyone’s love of festive cheer, the event provides Santa suits and elf ears to make everyone a “helper” in spreading joy. The parade lasts for a half mile through downtown Harrisonburg right before the city’s holiday parade. We asked Heather Denman, Executive Director of the chapter, what makes the event so special and successful!

How did the Santa Run, Walk, ‘N Roll get started? 

The Arc of the Piedmont located in Charlottesville VA has successfully held a Santa Fun Run for six years. The Arc of Harrisonburg and Rockingham was interested in establishing an inclusive friend- and fund-raising event and The Arc of the Piedmont generously helped get us started. We renamed the event Santa Run, Walk, ‘N Roll. The Arc of Hanover (another VA chapter) is having their first Santa Run this year. Our goal is to have all chapters of The Arc throughout Virginia conduct the event on the same weekend each December.

How far out do you begin meeting and preparing for the event to ensure success? What does the process of bringing it to life look like?

The main promotional thrust for Santa Run should begin in September, but we start the planning process with the submission of an application to the City in February. We also make early arrangements with The Friendly City Food Co-op where we begin and end the Run, Walk, ‘N Roll. We used Eventbrite for registration the first year but have purchased fundraising software (Salsa) that better allows for teams and individuals to sign up and invite people to sponsor them. Prizes collected throughout the year are awarded in a number of categories, including most money raised by an individual, most raised by a team, and best decorated wheelchair, stroller, and pet. Television, radio, and print advertising campaigns are donated in exchange for event sponsorships and they begin in October with increasing frequency closer to the event. Board and community volunteers help secure sponsors, distribute posters, and promote it on social media. At the event, volunteers help with registration and provide and dispense hot chocolate and cider, holiday cookies and snacks at the registration/finish line. Participants receive a bag with sponsor swag and coupons for Santas to enjoy a free or reduced price item at downtown restaurants post event.

How do you get other community organizations and companies involved, either as sponsors or participants?

Expenses for the event are very low (Santa suits are about $9) so corporate sponsorships more than cover the costs of the event. While we prefer to line up sponsors well in advance, companies often have funds left over at year end and are happy to help. Each sponsorship comes with free registration at commensurate levels—a $500 sponsor gets 4 free registrations and a $5,000 sponsor gets 20. This encourages sponsors to form teams and become engaged beyond their donation. Local universities help promote the event on their campuses. We also utilize our DD provider networks, The Chamber of Commerce, the United Way, and social media. 

How does the event serve as a vehicle for more people in the community to get involved in the chapter, either as volunteers, clients, or staff? 

Publicity for the event including promotion and media coverage create much needed awareness of our mission. An information station is manned at the event with sign-ups for volunteering, newsletters and memberships.

How do you ensure the event is inclusive and welcomes everyone from the planning side as well as the participation side?

We ensure staff and consumer participation by allocating Community Engagement (CE) or Community Coaching time to Santa Run. A fellow provider has offered overtime to all their staff who provide support to their individuals to participate. We also provide transportation to and from the event and have college volunteers on hand to provide individual support for members of CE teams or others needing assistance. A self-advocate serves on the board of directors and has been involved in the planning of the event and we are in the process of establishing a self-advocacy committee that will have representation on a state-wide self-advocacy alliance. 

Opening Up the Online World to People with Disabilities: Employment Spotlight

Digital technology is revolutionizing our day-to-day lives. It is rapidly expanding access to information, tools, and entertainment that helps us connect with the world and each other. It helps us dream bigger and achieve more. But with rapid change comes barriers to understanding and access. This is especially true for people with intellectual and developmental disabilities (I/DD), who may need extra support to master and use technological tools.

As part of The Arc’s extensive and long-standing partnership with Comcast NBCUniversal, 16 chapters across the county were selected to serve as Tech Coaching Centers to expand technology access and understanding for the disability community. Each coaching session is tailored to the participants’ unique needs and goals for navigating the online world. Through one-on-one sessions with their coach, each person has the opportunity to grow their skills and confidence. Read about one of them below.

The Power of Programming

Daniel hard at work coding

Daniel came to the Tech Coaching Center at The Arc of Carroll County in Maryland as a 14-year-old with a specific goal: he wanted to learn how to master JavaScript to become a web developer. His tech coach from the chapter, Jeremy, saw Daniel’s passion and created a multi-session plan to help him reach his goal. During these sessions, they practiced using code to create individual shapes and fill them in with different colors and textures.

Daniel has autism, ADD, and ADHD, which can present challenges in social interactions and typical learning environments. But when it came to coding, Daniel was an exceptionally driven and fast learner —quickly surpassing what his coach was even able to teach him!

“I found the class helpful in that it moved at the pace each student needed,” Daniel said.

Jeremy can attest to the benefit of the coaching too. “Daniel felt accomplished and proud of his design,” Jeremy said at the end of the coaching sessions. “He was put in a lot of detail and effort into his coding and it showed.” 

The results of Daniel’s efforts!

Without digital skills, people with disabilities—who already face numerous barriers to gainful and competitive employment—lose out on so much. With the right supports, they’re able to hone and present cutting-edge skills like coding to employers, and secure paying jobs in their communities…just like anyone else. At our Tech Coaching Centers, participants can build and refine the skills that will make the difference for THEM as they enter the workforce, including how to network, create and submit resumes, and find good job openings.

Since finishing at the coaching center, Daniel is currently taking two college level classes along with two high school classes. He intends to take two more college classes in the spring semester and apply for a waiver to graduate after 11th grade. Because he already skipped a grade in elementary school, Daniel will be 15 when he graduates! He’d like to major in video game design in college and eventually work in programming after school.

His unflappable motivation, coupled with his lessons at the Tech Coaching center, have given him the opportunity he may not have otherwise had to sharpen an invaluable skill that will make him a standout candidate to employers. Daniel is just one example of what we at The Arc and Comcast already know: when people with disabilities have the opportunity to learn and develop skills, they can participate in these spaces just like everyone else!

Interested in receiving coaching services? Find a coaching center near you.

Visit thearc.org/technology to see all the ways we are working to increase digital literacy in communities across the country.

Tech Coaching Centers and more made possible by:

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Connecting Passionate Volunteers to Meaningful Causes: Addressing Food Insecurity in NYC

By Andrew Pfadt-Trilling, Vivian Murray, and Joyce Minault (AHRC NYC)

New York City is a city of contrasts. It is the financial capital of the world while 1.4 million residents rely on emergency food programs. A place where luxury condominiums are built on the same block as people who don’t know where their next meal is coming from.

Last year, AHRC NYC was a recipient of a grant through the The Arc of the United States and the Corporation for National and Community Service to organize its first MLK Day of Service project to combat hunger and food insecurity. We saw this as a chance to look at neighborhoods where there is a real need, but also where there are passionate self-advocates and staff who want to be more connected and make an impact in their communities. We identified three neighborhoods (Crown Heights & Bushwick in Brooklyn; Lower East Side in Manhattan) and formed planning teams of staff and self-advocates that lived or worked in that neighborhood and asked: what if we planned a project that fought food insecurity, brought neighbors together, and strengthened community ties? Here is the story of how the Crown Heights team, B’lynx (Brooklyn Links Up) responded to that challenge.

B’lynx is a diverse team of people with and without intellectual/developmental disabilities, committed to enriching the Crown Heights community through innovation, passion, and fun. Since 2014, B’lynx has participated in community-based service projects and volunteer events with other local organizations.

The MLK Day of Service grant gave B’lynx the chance to develop as community organizers and take the lead in planning an initiative to bring people and organizations together to make a difference in Crown Heights. The team was excited to take on this role and when it came time to mobilize, self-advocates and staff began to hit the streets canvasing, recruiting volunteers, and spreading the word.

Recognizing that not everyone would be interested or comfortable doing the neighborhood outreach, the team made sure there were other ways for everyone to get involved and make an impact. Artists decorated boxes that were used for our city-wide food drives and distributed them to local businesses. Others created promotional materials such as flyers and bookmarks to raise awareness and recruit volunteers that were distributed to local libraries, cafes, and community centers. It truly takes a village to make something like this possible!

Volunteers organize food for distribution

The hard work of B’lynx paid off. On January 21st, 2019 over 50 volunteers came out in the harsh weather to help those in need, distributing over 500 pounds of food collected through the drive. They also provided hot meals to dozens of households through Rescuing Leftover Cuisine, a nonprofit organization that combats hunger and food waste by delivering excess food from restaurants to those in need. 

On top of the food-related volunteer activities of the day, B’lynx made sure the event also provided a space to showcase community partners and other opportunities to give back! Local organizations, such as community gardens and health centers, were present to share resources. There were arts and crafts tables for kids, healthy eating demos for all ages, and information of other volunteer opportunities in the neighborhood.

The MLK Day of Service has strengthened B’lynx even more and deepened their relationships in the Crown Heights community. This past summer they took an active role in neighborhood block parties, hosting arts activities for local children. B’lynx and the other change teams at AHRC NYC are already busy planning and looking forward to the upcoming 2020 MLK Day of Service, with the hope to help even more people!

Students smile for the camera while sitting at a desk

Spotlight: Inclusion From the Start With The Arc Montgomery County

Photo: Ann Maas Photography

The Arc Montgomery County Karasik Family, Infant & Child Care Center, affectionately known as KFICCC, is a family-centered child care program. In every classroom, typically-developing children, children with developmental disabilities, and children with special health care needs play and learn together. The program has been a smash hit in the community, due in no small part to the thoughtful planning and implementation led by CEO Chrissy Shawver.

By modeling and teaching inclusion from the start, The Arc Montgomery County is ensuring that the next generation knows the value of inclusion and spreads love and acceptance in whatever path they take. In case you missed their presentation at this year’s National Convention, learn more about how they’ve built such a successful program below!

How did the program start?

The current KFICCC program was originally two separate programs. Karasik Child Care Center was for children ages 2-10 years old with and without disabilities. It was named after Monroe and Joan Karasik, very strong advocates for people with disabilities. Family, Infant & Child Care Center was for children ages 6 weeks to 5 years old who were medically-fragile, or who had complex medical conditions.   

In 2011, these programs merged, becoming KFICCC (Karasik Family, Infant & Child Care Center). KFICCC is the only fully-inclusive child care center in Maryland, where children with and without disabilities and special health care needs play, grow, learn and explore together in all classrooms. Approximately one-third of the children enrolled have identified disabilities; the remaining two-thirds are typically-developing.

What is your training and onboarding process like for new staff?

All KFICCC teachers have college degrees and all other KFICCC staff must hold a 90-hour child care certificate geared toward the ages of the children with whom they work. The Arc provides a comprehensive on-boarding and training process, which includes CPR, first aid, Maryland State Department of Education trainings, and other trainings specific to working with people who have disabilities. 

The most important quality for KFICCC staff is a really strong background in early childhood education. The child is a child first; any disability is simply part of the child. If you understand child development, you can work with all children by simply getting to know them and being willing to make accommodations to meet their individual learning styles and needs.

What about new children? How do you ensure the transition into the program is smooth and that everyone is set up to succeed?

KFICCC offers a seamless delivery of services, including therapies, special education, pre-kindergarten, and on-site nursing support. It’s all about coordination of care and giving parents an integrated support team.

New children come with their parents to meet with the staff and tour the building. During this visit, the child spends time in the identified classroom. Once a commitment is made, the child attends for his/her first week, spending progressively longer periods in the classroom. 

If the child has an IEP or IFSP, the staff will meet with the child’s team to learn how to best meet the child’s needs in the classroom. If the family is not yet linked to services, staff may recommend them to Child Find or Montgomery County Infants & Toddlers Program.

What should chapters who are trying to implement a similar program in their community know?

Operating KFICCC is expensive, primarily because child-staff ratios must be higher than what is required by licensing. Community partnerships are essential for success.  Staff must believe in inclusion and understand the benefits of having children with and without disabilities in the same classroom. When done right, it should be hard to tell who has a disability and who doesn’t—the program should feel very natural.

What has been the most challenging part of building the program, and how did you overcome it?

Adequate funding was and continues to be a challenge, especially when trying to keep the cost of child care affordable for families with lots of other financial pressures. It’s key to have someone who can write grants and connect with other funding sources because the program cannot run on tuition alone.

Another big challenge was breaking down barriers. Parents had many misconceptions about their typically-developing children “catching” disabilities or being held back because the attention was directed to children with special needs. The only way to overcome that was to demonstrate that it was untrue. Today, KFICCC’s greatest advocates are children without disabilities, because they just see their friends—not the disability.

Students pose for a photo wearing orange shirts
Photo: The Arc Montgomery County

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

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.

An older woman in glasses and a green turtleneck stands smiling at the camera with her hands clasped

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

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 (I/DD).

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 I/DD, 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 I/DD community, please click here.

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

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

Two women sit at a table with a bookshelf in the background. One holds a pen and points to a brochure the other woman is holding open.

Improving Recovery From Sexual Assault With Trauma-Informed Care

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 (I/DD) 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 I/DD 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 I/DD 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 I/DD 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 I/DD 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.

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

Today, with advances in medical care, deinstitutionalization, and people working and living more productive lives, individuals with I/DD 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 I/DD.

Mary Anne poses with a resident, who is wearing a costume tophat.

Mary Anne with Marilyn, a resident who recently passed away at the age of 93.

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 I/DD 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 I/DD. Grief counseling also gives individuals with I/DD 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 I/DD for the news of a loved one being sick or facing a terminal illness? How do you support someone with I/DD 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 I/DD 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 I/DD 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.

 

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

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.