A. Family Profiles
1. Mike and Janice
Janice is mother and primary caregiver to Mike, 24, born with Down syndrome. Mike is third of four children having two elder sisters and a younger brother. Mike and his younger brother reside with Janice and Mike attends a day program full-time. Janice is no stranger to difficult times as over the years she has lost five of her seven siblings as well as her husband. Janice and Mike have support from friends and family, notably Janice’s older sister who lives nearby. Janice and Mike were interviewed together for 65 minutes. Mike speaks in one or two word utterances and has a pronounced memory for names.
2. Maria, Gary, Crystal, Carrie and Andrew
Maria and Gary, who have been married for 35 years, head their family of five. Support for daughter Crystal, aged 33, diagnosed with a developmental disability, OCD and schizophrenia, defines much of family life for Maria and Gary. Crystal has two siblings, Carrie, age 31 who lives with her husband Matthew and is expecting their first child, and Andrew, age 27 who lives on his own.
Crystal lives with her parents, and Maria has been full time caregiver for Crystal’s entire life. Gary is newly retired from a 40-year career in financial services and now more involved in Crystal’s daily support and routines. Carrie and Andrew were each interviewed one-on-one for 90 minutes while Maria, Gary and Crystal were interviewed together for two and one half hours. After the first hour of the group interview, Crystal had her lunch then left with Gary to be dropped at her day program. The interview continued one-on-one with Maria for 40 minutes until Gary returned and rejoined the interview for the final 30 minutes.
3. Donna, Martin, Susan and Joelle
Donna and Martin lead their reconstituted and adoptive family in support for Susan, age 20, who has a developmental disability. In addition, Susan’s sister Lisa, age 24, was labeled “gifted” when Lisa was in grade 7 and presented some distinct learning and social needs. Further, Lisa had sustained a brain injury four years earlier but had since resumed much of her former education and work pursuits. Donna and Martin have been married 29 years and adopted both Susan and Lisa as newborns. Three step sisters to Susan and Lisa, Joelle, age 37, Rhonda age 38 and Jamie age 43, from Martin’s first marriage, round out this family. Data from this family were collected in an interview lasting 130 minutes that included Donna, Martin, Susan, and Joelle.
4. Sandy and Dave
Dave, a middle-aged man with a cognitive disability, lives in a small town in a rental property owned by his mother Sandy. Dave and his older brother Robert are Sandy’s children from a previous marriage. Sandy married Chris when Dave was five and Robert was seven and Chris is the father figure with whom Dave and Robert identify. Sandy and Chris live on a farm a few kilometers from the town where Dave lives and Robert, his wife and two grown sons live on a neighboring farm. Sandy describes Dave as central in the life of her family. Dave lives with a roommate and has a full schedule of paid and volunteer work and is well known in town. Dave and Sandy each took part in one on one interviews; Sandy’s interview lasted fifty-three minutes while Dave’s total interview time was twenty-nine minutes. Sandy also took part in the second half of a ninety minute focus group interview that included caregivers from other families.
5. Allison, Jean and Barbara
Allison, a 31 year old woman diagnosed with Prader Willi Syndrome, lives on a farm with her parents Jean and Arthur. Allison has part time employment in a small town a few kilometers from her home. Allison’s siblings, Barbara, 26 and Mark, 22, live in a large urban centre an hour away from their parents’ farm and are central to Allison’s support. Jean, Barbara and Allison took part in a family member focus group lasting two hours. Barbara also took part in a 30 minute one-on-one interview.
6. Lindsay and Ruth
Ruth is a middle aged woman and the eldest of five siblings. Ruth and two of her sisters, Andrea and Gillian, have developmental disabilities. Ruth and Andrea live independently and are involved in supporting Gillian who has severe disabilities and lives in a group home. Ruth, Andrea and Gillian all receive considerable support from their sister Lindsay. Rounding out the sibling group is brother Kyle who has removed himself from support provision for his sisters with disabilities. Ruth and Lindsay took part in a family focus group lasting two and one half hours.
7. Geraldine and Henry
Geraldine, aged 80, along with caregivers from other families, took part in a ninety minute focus group interview where she discussed support she provides for her brother Henry, aged 71, who has a developmental disability. Henry moved to reside in a seniors home once his mother was no longer able to care for him. Henry, a man of few words, attends a day program and enjoys being part of social interactions. Henry took part in a one-on-one interview with a researcher which lasted 15 minutes.
B. Family Care Context Facilitation of Voice
Our samples provide evidence of parents and siblings representing and facilitating the voices of their sons/daughters/sisters/brothers with disabilities in ways that reflect intimate knowledge and skill at avoiding stress and conflict. For example, Janice, interviewed with her son Mike who has Down syndrome and limited verbal abilities, strikes a balance between facilitating, and yet not pushing, Mike to express himself. Janice uses gentle probes yet retreats when Mike says ‘no’ or withdraws. Janice specifically prompts Mike to share utterances resembling the names of people in Mike’s close family and social network. Janice pauses her prompts when Mike is stumped to come up with a particular name then gently rejoins Mike several minutes later when he remembers and is ready to share further names.
Intimate knowledge and skill at avoiding stress and conflict was evident in an interview that included Susan, who is 19 years old and has a developmental disability, along with her older half-sister Joelle and their parents Donna and Martin. Donna sets the stage for the family’s appreciation of Susan’s personality and style as she describes raising Susan relative to another daughter Lisa, who was identified in junior high school as gifted. Donna points out how a sense of crisis ensued for Lisa when anything was less than perfect. Comparatively, Donna notes that for Susan, the ups and downs of life are like “water off a duck’s back.” Playing out her straight forward, unruffled style, Susan shares some experiences including having established an important friendship: “We met in element, we met in middle school, grade 6 band class. She was being bullied a lot and I just, I didn’t see any, I didn’t see any problems with her as we, we became friends really quick.” Susan goes on to share her interests including her love of animals. Donna and Martin elaborate about Susan’s skills and interests with Donna pointing out: “Susan is exteam, extremely artistic” This prompts a series of questions from the researcher inviting Susan to describe the materials and colors she uses in her art work and perhaps show a sample or photograph of her work. Susan declines to do any of this in a direct and matter of fact way. Donna and Martin then provide brief details about the types of materials Susan uses in her art then wrap up the topic with Donna noting “She was, she’s always been, ah, very reluctant to show anything, even to us” and Martin echoing “Extremely reluctant to share”. In similar fashion, Susan is supported by her parents and half-sister as she leaves and rejoins the interview several times, asking occasional questions about what is being discussed.
In family member focus group settings, parents and siblings facilitate the voices of their family member with a disability by reinforcing ideas that are expressed and asking for ideas that are not expressed. For instance, Allison, who has Prader-Willi syndrome, expresses that she would like to live in a group home as well as with her family. Allison’s mother and sister endorse her view adding: “we always include her and I couldn’t’ imagine planning something without her.” In another family member focus group, Lindsay intentionally stops the flow of conversation to make space for her sister Ruth, who has a developmental disability, to share her ideas. With some prompts from Lindsay, Ruth expresses pride in maintaining her own apartment along with feelings of worry over financial matters.
C. Family Context Constraints on Voice
1. Voices Obscured by Established Care Identities
Voices of adults with disabilities can be obscured amidst discussions that include their caregiving family members. For example, family members in focus groups describe challenges of navigating educational, social, medical and financial needs for adults with disabilities and point out “You have to have people around them to know what’s good for them”. Lindsay, discusses being alternate guardian for Ruth, who is also a participant at the focus group, as well as for two other sisters with disabilities noting: “they can’t take care of themselves.” Illustrating how adults with disabilities may need others to be involved in setting priorities and making decisions, Sandy, in a focus group interview, and her son Dave who has a developmental disability in a private interview, each describe Dave’s abilities to live with a room-mate and manage many aspects of day to day life, including holding a job and preparing meals; yet Dave and Sandy are both clear that Dave relies on Sandy to do his food shopping in order to ensure he has a well-balanced diet. Not unlike Sandy, Carrie, whose sister Crystal is diagnosed with PDD, OCD and schizophrenia, describes her worry for Crystal’s safety saying “I’m very protective of her…I don’t trust the public. I don’t want her to take public transit …I worry that she’d get taken advantage of.”
Accepting that adults with disabilities need support in ways described by Lindsay and Sandy, two representatives from an agency supporting adults with disabilities add their caution about families failing to evolve their ideas of what their family member with a disability may be capable of doing and deciding. Instead, family members may attach a young “chronological age”: “It doesn’t matter that they’re legally eighteen. It’s very, very, shocking and hard for them (families) to understand and cope with that whole mentality that they’re legally an adult and can make their own decisions”. Indeed, many adults with disabilities have lived their entire lives in their parents’ homes and “under” their parents’ care resulting in entrenched roles for both care receiver and caregiver. Dave, a middle-aged man with a developmental disability, has a job and lives with a room-mate with whom he shares household responsibilities. Yet his mother Sandy conveys the workings of caregiver/care receiver identities as she notes that despite Dave’s competence and independence, Dave “will phone the minute that he has any kind of a problem.”
Bernard, employed by a mental health support agency, speaks of caregiving as an ingrained identity noting that caregiver care-receiver relationships are mutually reinforcing: “They have adopted this as their lifestyle. It’s almost symbiotic.” Ingrained, symbiotic care identities play out in multiple ways in Crystal’s family related to care for Crystal, 33, diagnosed with pervasive developmental disorder (PDD), obsessive compulsive disorder (OCD) and schizophrenia, who was interviewed together with her parents, Maria and Gary, with whom she lives. Crystal’s sister Carrie and brother Andrew, with each of whom Crystal spends one weekend every 4-6 weeks, were each interviewed separately. Although Crystal begins her interview, that included her parents, with insightful questions for the researcher about distinctions between streams of graduate education at the researcher’s University, when the researcher poses questions to Crystal, Crystal looks first to Maria. Crystal offers Maria opportunity to lead the response to the question that had been posed or, if Crystal does begin an answer, she does so cautiously while looking to Maria to ensure her answer is “on the right track”. Accordingly, Maria and Gary correct a number of Crystal’s responses including Maria disputing claims Crystal makes about how much time was required for Crystal to get accustomed to her medication. Maria corrects Crystal’s table manners during the interview and when Crystal describes progress she had made, both Maria and Gary remind Crystal of how much effort it takes them as parents to keep her focused on completing required tasks. On a number of occasions, the focus shifts from Crystal’s accomplishments to the work required of Maria and to a lesser extent, Gary, in supporting Crystal. As Gary talks about having to remind Crystal many times about what needs to be done, Maria comments: “My whole life is spent waiting for Crystal.” In her own defense, Crystal claims: “I, I, sometimes I’m in a zone and I don’t remember. I, I…” Although at one point, Maria notes that “Crystal makes her bed, she washes, gets herself cleaned and looks after her own self”, at another point, Maria summarizes that “Crystal doesn’t do anything for herself”. Later Maria concludes that Crystal is “a lot of work” while Crystal timidly chimes in “I just need some training and education”.
In her private interview, Crystal’s sister Carrie expresses delight in having contact with the “real” Crystal following a series of trials with different medications. Carrie expresses feeling protective and worried that Crystal can be “taken advantage of”. At the same time, Carrie emphasizes “pushing Crystal to do what I know she can do” and points out that Crystal engages in more self-help and independent living skills when she stays at Carrie’s house compared with when she is home with Maria and Gary.
In his private interview, Crystal’s brother Andrew also expresses delight for who Crystal is noting “she has built in forgiveness, ah…teaches you about a better way to be around people. I, I find it very hard to forgive people…just her, her forgiveness is unbelievable and her compassion is unbelievable.” Andrew believes Crystal is a cohesive force in his family noting: “by having Crystal it’s brought us all together. You know, to support her, we all support each other.” Andrew believes that Crystal’s potential to be adaptable and independent is constrained by Maria’s long established caregiver identity. Andrew claims: “the concept that someone else could do it successfully I think threatens her [Maria’s] identity as a caregiver.” Andrew describes his mother as not having “had a chance to develop her life outside of that” and as focusing on “the short term and avoids the longer term arrangements.” Accordingly, Andrew notes having discussed future living arrangements for Crystal with Carrie and her husband but this is being treated as “a mysterious plan” about which Carrie and her husband “didn’t want mom [Maria] and dad [Gary] to know.” Andrew reasons that there would be “resistance there” and postulates that resistance would be more from Marian than Gary. Andrew believes “that a kind of a weaning needs to take place” for Crystal to recognize him or others as authority and not defer to Maria.
Maria, as primary caregiver to Crystal, rather than questioning her caregiver role, presents herself as an authority on her daughter’s needs to the extent that Crystal is often spoken about as if she was not present. When Crystal attempts to make her voice heard, she is often spoken over or interrupted by Maria. Indeed, Maria’s other children are discussing future changes for Crystal without their mother’s knowledge.
2. Voices Obscured Amidst Families as Fierce Defenders Against Systems
Authoritative family caregiver identity, such as that exemplified by Maria, may grow as families define themselves as “up against” a formal care system that cannot be counted on for appropriate support. Ideas of families versus systems continue to play out against a backdrop of the post war institutional era during which family member views were disregarded. Older family members in particular, have vivid recollection of trauma from life in large institutions. During a family member focus group, a mother of a middle-aged daughter describes reading stories written by residents of institutions as “terrible” and “unreal.”
Donna discusses securing appropriate formal support for 19 year old Susan in terms of her own willingness to ‘fight’ and be vigilant. Reflecting on Susan’s admission to school, Donna says:
Well they weren’t going to let us get in to any school where we weren’t in the district. And, ah, I’m sorry we’ve met with the Minister of Health, we’ve met with the Minister of Education…When you have a child that needs support, if you don’t stand up for them, they’re just pushed aside and they fall through the cracks…you have to push so that they get the best that they can.
Even when hard won formal supports are in place, families defend against a sense of intrusion into their lives which these supports represent. At a family member focus group, a mother of two children with disabilities recalls fighting for needed support yet feeling “overwhelmed with somebody always knowing [their] frickin’ business.” This mother resents “well meaning” professionals telling her how her children are “supposed to interact”. She notes further that in light of professional involvement in family life, families live with the stress of the idea that they must follow every directive from professionals and if families “don’t do everything perfectly, then something’s going to go wrong with your child”.
At an agency representative focus group, one professional from a family support and advocacy agency discusses ways in which formal supports intrude into families’ lives as she notes that to be eligible for formal support such as respite families must “show all their needs and deficits…” She remarks further on the paradoxical nature of supporting people with disabilities and their families wherein: “We’re supposed to be pumping them up, talking to them about how they can be all they want to be and they can have authenticity …. and they can have citizenship and they should have these things and they should have all this stuff but first you gotta make them all pathetic”.
To this line of thinking, a focus group participant from a community agency providing support to adults with extreme behaviors adds dryly: “you gotta bleed first. You gotta suffer first”.
Crystal’s father Gary makes a point for why families go through the struggles associated with demonstrating “eligibility” for professional support as he speaks in terms of Crystal’s daughter’s diagnosis in terms of legitimacy: “The nice thing too about Crystal being diagnosed and making it medically official and having it written down is that now when we went for support… we could provide medical records that confirmed that she has these legitimate problems”.
The flip side of the “legitimacy” issue is illustrated by Jan, a family focus group participant whose sister Tanya was diagnosed with “schizophrenia like symptoms…in her late forties,” and who comes from a “guarded family” who “coped within the family” despite knowing “from the time Tanya was small…there was something a little different about her.” As Tanya’s more complex needs manifested in adulthood, it “finally…came to a point where no one could deal with her”. Jan states “when we went for help, they say no because it’s not recognized that it was caused from birth, or a childhood disease or childhood symptoms…she doesn’t qualify… there’s no documentation of her ever having any mental health issues”.
Families’ quest to sufficiently demonstrate need in order to obtain services continues across the life course with their children’s transition to adulthood often being distinctly stressful. In a family focus group, Jean, mother to Allison who has Prader- Willi syndrome, reflects: “when they’re in the school system, the parents almost get kind of fooled ‘cause there’s usually quite a bit of support and then when they become an adult, oh that’s quite different.” Parents discuss abrupt changes in expectations or consequences for their adult child and one mother voices: “It’s like the system give up on adults in a way… cause when they’re children, they’re learning things and they’re moving forward and they’re graduating from something.”
Obtaining formal supports is one part of the journey; ensuring an adequate quality of formal supports is often an added struggle. Deficiencies in quality are many and varied and can stem from an undervalued workforce as per Carrie’s description of the state of formal supports surrounding her sister Crystal: “they’re short on workers because it’s not an industry that pays a lot right so … they have to want to work with people and it ranges from anywhere with like Down syndrome to like my sister so or people in wheelchairs”. Barbara adds that staff that are inadequately skilled/poorly trained can have the effect of contributing to, rather than solving, problems. Barbara illustrates with an example of her frustration with staff who “project their own drama” into the workplace and contribute to her sister Allison having behaviour outbursts: “It’s like they’re setting it off and then they’ll go write up all this paperwork and say well she had this incident. Well you triggered it, like you’re doing this.”
Geraldine, whose brother Henry is aged 71 and has a disability, elaborates with a concern that the quality of formal support environments is related not only to staff but also to other participants in the environment. Geraldine’s example is about how adults with lifelong disabilities can be stigmatized by older adults without lifelong disabilities as she reflects on time Henry spent in a long term care facility: “He was ostracized. Other senior citizens ostracized him.”
At an agency representative focus group, a social worker raises a relatively universal issue of the constraining nature of government sponsored income support for adults with disabilities stating simply that “If they’re on AISH (Assured Income for the Severely Handicapped), we enforce poverty”. Robert, from a small community agency that supports adults with disabilities and/or mental health issues, highlights the distinct ways in which financial constraints of disability support incomes can play out for people in small communities, particularly in times of economic prosperity and rising rents: “they end up in a town with 50 people in it cause they can get a house for 300 (dollars) you know but they have no driver’s license, now they’re geographically isolated and there’s no way they can afford to get out of that town.”
Crystal’s father Gary conveys a sense for his family coming to terms with inadequacies of the formal support and services system as he reflects: “we come to the basic conclusion – how bad is it to have Crystal with us? It’s very tolerable. Ah, we don’t mind having her with us. Yes, it, it restricts our life somewhat but overall we can deal with it and in our view, it’s a hell of a lot better than the alternatives”.
3. Agency Empathy for Families with a Dash of Caution
Aligning with parents and siblings of adults with disabilities who express frustrations with systems that are not supportive, most agency representative focus group participants express empathy and characterize families as understandably frustrated and weary of the journey of finding appropriate supports.
Agency support and empathy for families is offset slightly as some agency representatives share experiences with family members who are people from whom adults with disabilities require protection. Describing families who are extended beyond their limits, a supportive employment coordinator notes that under conditions of extreme family stress adults with disabilities are susceptible to being “…over medicated, maybe shut away, not included in the community any longer, um, you know rights taken away, opportunities that vanish, um, independence taken away.”
A developmental disability resource center supervisor elaborates on the idea of individuals being compromised and indeed, endangered by families as he describes experience with a parents or siblings using their family member’s disability support income to pay their own living expenses. In an extreme example, he recalls a woman who had received a cash settlement for having been involuntarily sterilized while living in an institution in the early 1970’s. This woman had purchased a home with her sister and her sister’s boyfriend, both of whom had mental health issues and addictions. Eventually: “the police were called because of the smell. That’s how bad it was. She spent six months in the hospital recovering when… police pulled her out of the house. It was worse than any hoarding show apparently known to mankind.”
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