Archive for category: Programs and Supports

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 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.

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.