Marie Murray explains the intricacies and balances of the caring role for families.
The Inclusion Ireland Conference in June 2013 (in the Gibson Hotel in Dublin) was entitled ‘Hearing voice and giving choice: Peer Support and Networking for self-advocates and families’. Two separate yet connected sessions took place in the morning. At one session, self-advocates met to discuss their lives, their wishes, their views, their choices and their proposals with regard to services and appropriate supports. This session was planned and run by advocacy groups such as the National Platform for Self-Advocates, Connect People Network and Seasamh, which ensures that service users have representation and a say in organisational decisions that concern them. The concurrent family session in the adjoining room explored how families can influence and support each other, the importance of shared experiences and building networks. Examples of family-led initiatives that had been developed to support people with disabilities in their local communities were given.
My own brief for the family session was to consider the intricacies and balances of the caring role for families, its challenges and possibilities, and the role of psychotherapy in this. In this context, this article outlines the kinds of issues that arise and the discussions that occur when families are given the opportunity to talk about their experiences.
Family life is complex. All families have challenges. Family stress does not arise exclusively in families in which there is a member with a disability, but research does show that when a family member has a significant disability, the family stresses are greater, particularly on parents. These stresses may then extend out and filter down into the entire dynamics of family life. In a time of recession these stresses are increased as services are decreased and already diminished vocational choices shrink further for everyone. This makes family support even more important.
Disability and grief
Disability inevitably brings most people into the grieving process, especially in the early stages when it becomes apparent that a child will face special challenges in life. In family therapy, therefore, questions arise in relation to this grieving process such as the following:
■ What assistance was given when the initial loss and grief of having a child for whom life would bring more challenges was experienced?
■ Who could articulate their upset/ disappointment/ anxiety / distress/ anger /sadness/ grief?
■ What dreams were lost? What fears arose?
■ How did life change? For whom did it change most?
■ How did people respond?
■ Who supported? Who didn’t?
■ Who was distressed? Who seemed to cope?
■ Who was depressed?
■ Who was rejecting? Who was accepting?
■ Who was angry and with whom?
Disability and parental relationships
In my own experience of talking with families when a family member has a disability, the following issues have also arisen:
■ The story of the disability, how it occurred, whether at birth or acquired, what it meant in the short term and long term, how it was handled and understood at the time, who, if anyone, felt responsible or ‘blamed’.
■ Whether or not parents could express sadness, disappointment and grief that their child would have a life that was harder, whether distress was suppressed, spoken by some, denied by others or even discussed at all.
■ Whether both parents viewed the disability similarly or differently?
■ Whether it brought parents closer together or drove them apart.
■ Whether they were able to talk about it or unable to do so.
■ If there was denial or acceptance of the disability by one or both parents.
■ If parents resolved issues together or apart.
■ What expectations parents had of the ‘child’ and the future.
■ Who if anyone believed/hoped there would be a developmental catch-up or a miracle cure?
■ When, if ever, did hope fade for one or both parents?
■ How parents negotiate care now.
Disability and family relationships
The issues of relationships and how they are altered or changed also arise in family sessions and include the following discussions:
■ What supports were initially provided to parents by family, neighbours, friends and relations and the community in general.
■ How disability in the child/adolescent/young adult has altered the parent/child relationship in both positive and negative ways?
■ How the balance of dependence and independence, protection and empowerment, safety and freedom is managed when a young adult requires special supports.
■ How are relationships managed with brothers and sisters, with aunts and uncles and grandparents, with family and friends and the extended family and all the different views that people may have about what is ‘best’ for the person with a disability.
■ Who listens best to the wishes of the person with the disability?
■ How do parents let brothers and sisters help without burdening them and without feeling guilty if they call on them for support?
■ How do parents seek help without hampering relationships and good will in their other children?
■ How do parents avoid taking on everything themselves?
■ Does attending to the person with a disability get priority and who if anyone in the family may resent this?
■ What opportunities are given to brothers and sisters of the person with a disability to be of assistance? How does this differ depending on family size?
■ Who in the family appreciates the person with a disability most?
■ Who does not?
■ Who offers support and assistance?
■ Who cannot do that?
■ Who resents having to help out?
■ Is there one brother or sister who supports more? If so is that person called on automatically to help? Too often? Unfairly?
■ Are parents so protective of the family that they do not ask for help?
■ Are they concerned that help is a burden and therefore they take on more than they themselves are able for?
Dealing with professionals can be difficult for families who find that they have to negotiate with so many different services, speak to so many people, acquire knowledge and expertise in relation to their rights and entitlements and how to make the best decisions for/with their own child. The following issues therefore also arise:
■ What social services are available?
■ What professional help is sought and provided for the family?
■ Is it enough? It is supportive? Is it encouraging?
■ Does it empower or disempower?
■ Is it experienced as respectful?
■ Is the unique experience and knowledge of the family has considered?
■ Is the person with disability consulted sufficiently?
■ Has the family sought family therapy?
■ If not, what are the issues that such conversations might help and who would this help most? Who would wish to attend and who would not?
■ What does the family need now?
■ What concerns do parents have for the future?
■ Who can help them best with these concerns?
■ What financial, trust, legal arrangements might need to be put in place to ensure their child’s welfare when parents die?
Transitions from child to adult services
A crisis point for many families occurs at the time of transition from child to adult services. At this point the issues that arise in therapy include the following:
■ Confusion about what the adult role for the person with disabilities should be?
■ How do you balance safety and autonomy?
■ How do you respect individuality and development while not exposing a vulnerable person to danger?
■ How do you assess risk when parameters are different? What is the balance between protection, overprotection and exposure to risk of those who may be more vulnerable in certain areas than others?
■ Young adults with disability often leave home later than the usual time or do not leave home at all. How is preparedness for leaving home measured and by whom?
■ What is the role of the community? Is there a community that is vigilant, supportive, and appreciative or is it anxious, suspicious, fearful, ignorant?
■ The issue of capacity—how is that defined and understood?
■ Other issues of decision making—what are the rights of the person with disability to their own medical care, own decision making vis-à-vis ensuring that choices that are made are informed, are not impetuous and are in the best interests of the person?
■ Is professional intervention experienced as available, supportive or intrusive?
■ What it is like to be at the behest of services and the whim of provision?
■ Access to services—who cares for the person and for the carer?
■ The danger of burnout, fatigue, feelings of helplessness, hopelessness, feelings of exhaustion in parents after years of struggle and too much worry for too long.
■ Parents’ own entitlements to life with respite from care.
■ Loss of dignity in having to keep asking for what should be rights and entitlements.
■ Negotiating complex service and government systems, spending hours online, talking to hundreds of people, having to be educator, psychologist, legal expert and advocate.
■ Ensuring participation of their ‘child’ as a citizen and an integral part of society and community life.
Emotional challenges for the person with disability
In the wealth of discussion about the person with disability, the person with disability themselves can get lost. So much time is spent on intervention, on accessing services, on measuring progress, on educational goals and in planning for the future that the individuality, the uniqueness, the personal, emotional, affective life of the individual with disability can be overlooked. For a person with disability there is also loss, perhaps grief, yearning and longing and the wish, that we all have, not to be different, to be accepted, to be loved, to be good at something and to be helped with what is difficult to do, to have skills recognised. The issue of psychotherapy for people with disability is one that requires greater attention in the light of the experiences for the person with disability and the need for a place in which that person can safely address those personal experiences in an age-appropriate way.
The issues that have been identified for discussion include (using age- and stage-appropriate terminology and/or other media) the following:
■ Early life experiences – memories of that.
■ Feelings of being dependent – expectations of others and of themselves.
■ Family relationships, feeling different, having to be minded, feeling the resentment of brothers and sisters or feeling too special in the family.
■ To what extent did the person with disability recognise and understand their difficulties and difference from others?
■ How did it show?
■ What did it mean to them?
■ Could they talk about it?
■ Were they accepted or rejected, supported or bullied, patronised or privileged, protected, overprotected or left to fend for themselves?
■ What self-concepts emerged?
■ What view of self was shaped by having to attend a different school or additional services? speech and language therapy? occupational therapy? finding some things more difficult to achieve? needing specialist help? having professional intervention?
■ How did they feel when they could not participate equally with classmates in some activities?
Psychotherapy and disability
The provision of psychotherapy to people with learning disability is an important issue in any rights-based, equal-opportunity, respectful, collaborative approach to services. Of course there are questions as to how this can be provided keeping in mind issues of informed consent, capacity to engage in therapy, issues of contracts and confidentiality, age-appropriate content in psychotherapy discussion and appropriate models of therapy—given the wide range of therapy models that exist.
The provision of psychotherapy is further complicated by the fact that while there have been a number of Irish professionals and services that have provided psychotherapy as part of their overall service provision to people with disability, we do not yet have national strategies, practices, procedures, protocols or best practice guidelines for psychotherapy for people with disability across the entire ability-disability spectrum. This is a loss for individuals and families dealing with the multiplicity of challenges that face them. The questions that arise in relation to psychotherapy include the following:
■ What access to therapy, if any does the young person with disability have?
■ How is this done ensuring safety, confidentiality, age-appropriate conversation and models of therapy?
■ How can people with disability be both protected and empowered?
■ How do they get to express the emotions that all young people feel?
■ How is their frustration, their disappointment, their sense of difference, their sense of being cheated managed?
■ Are they also protecting the family from what they feel just as the family is protecting them?
■ Is their emotional life over managed? Is it over-intruded upon? Is it dismissed or ignored or viewed as part of disability?
■ How are decisions made and at what transitional and developmental stage can the person with a disability gradually assume more responsibility.
■ At what stage (if possible) are decisions made more by the young person and less by other family members and professionals?
■ What is the difference between imposition and consultation?
■ How can consultation be respectful, sensitive, warm, realistic, supportive and collaborative?
■ How can professionals assist individuals and families while respecting the uniqueness of the person with a disability and that person’s family?
It is, of course, a cliché to say that none of us is without some disability. In our cache of strengths and challenges each of us knows what we can do well and with ease, what we do with difficulty and what defeats us. We each have the right to recognition of our abilities, support for our disabilities and respect for our unique skill set that we bring to the world. That includes all of us. It took expansive thinkers such as Howard Gardner in the early 1980s to recognise the damage of deficit models of assessment and the extent to which psychological testing focused on difficulties rather than strengths. He recognised the indispensable role played by family support, societal interest, cultural values and appropriate services to find, nurture and encourage all talents in everyone.
The current rights-based, client-centred, collaborative ways of understanding what people want, rather than a top-down expert stance, is a direction to be welcomed. This requires truly respectful recognition, listening, empowering and co-construction of services that are family and user friendly and facilitate the provision of what people want, instead of what they are told they ‘should’ do. This may seem to be especially difficult at a time of cutbacks and scarce resources, but it is crucial, from an ethical perspective, that there is no return to old models that assess, categorise, institutionalise, segregate, marginalise and exclude any citizen from as much self-determination and choice as possible within that person’s capacity. We are all entitled to this.