Interview with Nancy Webster

Nancy Webster is the Board President of The Arc of the United States. The Arc is the largest national community-based organization promoting and protecting the human rights of people with intellectual and developmental disabilities (I/DD) and actively supporting their full inclusion and participation in the community throughout their lifetimes.  The Arc is an organization with 700 chapters across the country, advocating at the local, state and federal level and providing services and supports for people with I/DD to achieve their dreams, including accessing health care, working in the community, and living as independently as possible, to name a few.  The Arc serves all diagnoses, including autism, Down syndrome, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses.
Q: Why did The Arc choose to partner with HFA on its fall 2013 program, Supporting Individuals with Intellectual and Developmental Disabilities Through Life-Ending Illness, Grief and Loss?
A: We are pleased to partner with HFA for what is a tremendous opportunity to open up conversations about helping people with intellectual and developmental disabilities cope with end-of-life issues and grief. Even the general population is not often comfortable talking about these topics. And many families have an understandable instinct to “protect” the family member with special needs from grief and loss. I think this is in part out of concern for that person’s response, and honestly in part because of their own concerns about how to manage that response.  But from my own experience, and by learning from other families I have met through my work with The Arc, grief and loss impacts all of us, including those with special needs, and it is critical for families and professionals to understand how to offer support.
Q: Can you tell us about your family’s personal experience with intellectual and developmental disability?
A: My sister Martha has I/DD and is my inspiration. Our mother and our brother were diagnosed with cancer about five months apart. When our mother was diagnosed, my initial inclination was to “protect” Martha and not fully inform her about the reality of the situation. And, to be honest, I was coping with my own emotions, and was not sure I would be able to manage Martha’s reactions on top of everything else. But my relationship with Martha has always been one of honesty and dealing with issues directly—and Martha knew that too. So while it was scary and sad for both of us, I was straightforward with her and brought her into the process; and in doing so we became, in Martha’s words, “the sisters who were a team.”
A major reason that this approach worked for our family is that the staff at the group home where Martha was living at the time were told right away, and did a fantastic job of supporting Martha. One way they showed this support was that they made sure that everyone else in Martha’s “Arc Life” knew what she was going through, so Martha received support not only from staff but from her peers.  A few years prior, someone who lived in their group home was facing his own end-of-life situation; he was able to stay in the home and Martha and other peers helped care for him. So Martha and I both had a real sense of trust that the staff would be ready to support her during our family’s experience.
Q: You mentioned the understandable concern that you had about how you would support Martha during this difficult time; what lessons did you learn that you can share with other families?
A: Martha’s description of us as a “team” was right on target—and in the process, I gained great support from her during my grief as well. Because I was honest with Martha about what was happening, she was able to make choices about how to participate—she wanted to meet with the minister, go with me to the mortuary, offer a prayer at the cemetery. Each person with special needs will have his or her own ways that she may be able to contribute, but it is important for families to find ways to allow that to happen. It’s not always easy during such a stressful time, but it’s worth it; I remember Martha telling me with pleasure, “Mom would be proud of us, wouldn’t she?”
Another message I want to be sure to share with families is the great role that peer support plays for people with I/DD. Many parents and siblings I meet in my work with The Arc have told me that, for their loved one with special needs, support from their own friends and peers has been a great comfort and resource in times of stress. One family, whose son with Down syndrome died as an adult, said that their greatest support came from his friends: “They hugged, they signed their love, they drew pictures, they cried and laughed with us.” As we discussed earlier, sometimes peers with special needs may be seen as an added concern, that instinct to “protect” may carry over. But everybody needs support, hugs, pictures, tears and laughter; incorporating friends and peers into the grief process can be of enormous help to every family member.
Q: What about the role of sibling support? Obviously that sibling relationship is a big part of your life, what role can siblings play in this process?
A: The Arc has started a National Sibling Council, to formally acknowledge and support the role that siblings play in the life of someone with I/DD. When the person with I/DD is younger, parents may not want to pull the siblings in too much; there’s a concern that they want those siblings to “stay kids” and not have their lives pulled too much into the needs of the family member with I/DD. Yet all of us, as siblings, need to be, and want to be, “pulled in” to some extent; if for no other reason than the reality that, as parents age, it is most often the siblings that are providing grief support and possibly even support as the person with special needs faces their own aging process.
The sibling experience is so different from that of the parents, and siblings experience living with I/DD in such a different way. I have found that many siblings develop what I call “kid codes” with their sibling with special needs—unique ways of communicating and sharing information, sometimes ways that parents don’t even know about! So when confronted with the stress of death and dying, or grief, these relationships can be essential in providing a great resource and source of support.
Q: You spoke earlier about Martha’s participation in many of the rituals that often accompany the grieving process. What role can ritual play in helping someone with I/DD cope with grief and loss?
A: Talking about ritual is very important with this population. In many ways, and for persons with a range of intellectual and developmental disabilities, ritual gives people a sense of control, in a life where there are many, many situations beyond their control. For instance, many people with Autism Spectrum Disorder may develop specific rituals as a coping mechanism. Letting persons with special needs choose these rituals during times of stress, such as in grief and loss, is critical. But yet it can be very hard for families, particularly when the rituals that person chooses may not be what the family would choose. Honoring those choices (and helping professionals to also be willing to do so) is a wonderful way to support that person with special needs.
Q: What other advice can you share with professionals, particularly hospice professionals and others who may be working with families facing end-of-life and grief?
A: I always like to encourage professionals, anyone working with someone with special needs, to be as natural, as “normal”, as possible around that person. I recognize that this is not always easy, especially with a person who has significant disabilities. One helpful suggestion can be to take the lead from the family, who has established strategies and skills around communication. For instance, a family may choose not to tell the person with special needs all of the details about Grandma’s end-of-life situation; as difficult as that might be for professionals, they need to mirror that choice and honor it for the family. Of course, the positive role that the professional might play is to offer the family some resources and strategies for coping with Grandma’s death, which they then might choose to share with the other family members.
One concrete piece of advice is to be comfortable with answering repeated questions about the death or the illness. Many people with I/DD deal with “perseveration,” which is repetitive behavior. Sometimes when that person is dealing with loss, these questions may be misconstrued that way. But more often than not, the repeated questions may just be that person’s way of coping with and expressing grief after a loss. Stress may be expressed differently with people who have special needs. In my experience, hospice professionals want to know the best way to offer support, and should feel comfortable talking with the family to understand what might be common stress reactions and which reactions might be ones for concern. Families will have developed a lens, a window they use into what works best to support their loved one with special needs. But at the end of life, hospice professionals might be able to open some ‘new” windows for them, to help all of them cope with this new and difficult situation.
This point brings me back to another piece of advice for families, which is to be sure to utilize the full range of professional support they have for their family member with special needs. Sometimes families dealing with illness and grief may be reluctant to bring in other staff members in the person with special needs’ life, but this network can be invaluable in providing resources and support.
At the same time, families should reach out to their own network in times of stress. Most families who have loved ones with special needs have already developed a “network” and know who they can count on, and with whom their loved one feels comfortable. And it’s okay to be specific—“I have to be at the hospital with Mom tomorrow, can you please pick up Fred after work at 5p, take him to dinner, and be sure he gets back to his home [note: not everyone lives in a “group home”]for a meeting at 7pm?” Friends want to help, and families who have been caring for a loved one with special needs for years know the importance of this support!
Q: How can we best help families when someone with I/DD has been diagnosed with a life-limiting illness?
A: I am often surprised when I talk with families and ask if they have planned for a family member’s care when they can no longer provide care themselves; the percentage of families who confide that they have not done this is very high. So if that family is avoiding general planning around aging and caregiving, what resources will the family have in place if their loved one with special needs develops pancreatic cancer or end-stage heart disease? At The Arc, we have excellent resources to help families with these difficult planning decisions; this is a place where siblings again can play an essential role.
In terms of actually caring for the person with special needs who is facing his or her own end-of-life situation, professionals can again learn a great deal from the family. Trust that families will be able to understand stress reactions, even non-verbal cues that may signal pain or discomfort, or spiritual or emotional distress. Every family will tell you that they “know” what their family member with special needs is feeling, even when that person may not be able to easily communicate. These cues may look very different to professionals not accustomed to working with people with I/DD, so working closely with the family or the staff of the group home can be a very important way to provide the best care to that person. ?
Q: You currently serve as the Board president for The Arc. How did you and your family become involved with this organization?
A: I don’t remember not ever knowing about them! When Martha was about 5, my parents and some other families decided to start a school for Martha and some other children with special needs in our community. A teacher from The Arc in New York moved to Chicago and lived with us, and taught school for Martha and the other kids. So when Martha and my parents moved to Indiana, it was just natural for us to continue to connect with an Arc chapter in that community. I was asked to join the board of our local Arc chapter over 30 years ago. One of the most important aspects of my relationship with The Arc has been how fortunate our family has been to have support for Martha to live in the community in the way that she has chosen to. I hope my work with The Arc has enabled me to help other families experience that support.
The work of The Arc focuses on supporting individuals with I/DD wherever they are, in whatever choices they make that work for each individual. This upcoming program with HFA mirrors that model—look at what loss looks like for that individual in front of you, and support him or her in that process.
September 2013