Monday, March 27, 2017
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From a Service perspective what would make a difference?

  • People with Intellectual Disability have a right to become parents
  • That right brings a responsibility to accept support and help where needed
  • Services should provide support where gaps exist and everyone should work together
  • Assessments should highlight strengths
  • All parents need help.

When people ask us as what we do as workers in services for people with Intellectual disability, in general we explain our role as ‘supporting’. That’s what we do; we support people in every area of their lives, ‘from cradle to grave’. We want people to do normal things, to attend school, to socialise, to work, and overall to participate fully in their communities.

When it comes to supporting people to parent however, it’s a bit different. Expectations and attitudes change, fears take hold and somehow we become less enthusiastic.  Every agency that supports people with ID advocates the fundamental right of people to become independent, to take risks and to make mistakes. However, when people we support want to, or become parents, this philosophy inadvertently becomes less prominent and invariably moves to a culture of child protection, restriction and risk aversion.

Many years ago, we had experience of working with a couple both of whom had ID. Like many others, they had contact with services as children but ‘drifted’ away as adults. Almost ‘despite’ services, they had a family, but over time came to the attention of the HSE’s child protection team, now TUSLA. Their children were taken into care, and the only opportunity for contact was through weekly access. We were asked by TUSLA to help the parents seek ‘training and employment’ opportunities so that they might become better role models for their children. The parents’ overwhelming need was to be reunited with their children and they consistently asked one question “What must we do to have our children back?” Consistently TUSLA’s response was “demonstrate competency”.
So we agreed to support the parents to learn parenting skills using a multidisciplinary approach involving Social Work, Psychology and frontline Social Care Workers. We helped them practice, to role-play, to model, to anticipate, to plan, and to reflect but their only real opportunity to ‘demonstrate’ was their weekly access visit. This two-hour ‘window’ became the sole opportunity and a microcosm for the parents to show their competency and learning. Over time however, each access visit became a test, observed and assessed by TUSLA childcare staff. Despite the intensive support before and after, each access visit became a disappointment, a failure to demonstrate the necessary competency and eventually, over time, they lost heart.
In one sense, these parents were lucky – lucky that they got good legal support to decipher a most complex legal system; in retrospect, it was never going to work. Weekly access with small children is an extremely emotionally charged event for all concerned, and any parent would be challenged to demonstrate the required skills, especially under the watchful eye of well-meaning child protection staff. In such an environment, it is difficult for competency to flourish, but the expectation in the first place was unrealistic and essentially flawed. The parents did not have support during the access visit and therefore inevitably they struggled.

As with all the people we support, we fill gaps with natural, paid and volunteered support that helps people function and live the lives they choose. Assessing people without these supports is similar to assessing someone with a physical disability without their wheelchair.
More importantly, it could not work because of the conflicting responsibilities that exist between us, as workers in a Voluntary body and those in a child protection agency.

Although we all share a child protection mandate, our mission is to ‘enable’ the parents requiring opportunity, and opportunity creates risk. This inevitably looked like we were willing to compromise child welfare and created an understandable and ongoing conflict with TUSLA’s responsibility to protect and effectively ‘police’ such cases. The risks were too great, and while we could minimise them, we could not eliminate them. In the general population, we get an opportunity to learn somewhat ‘on the job’ when it comes to parenting, with timely advice from family and friends. People with ID learn better when training is ‘on the job’, but this facility is often denied parents with ID because of the risk involved with children.
More recently, we had a role in supporting a lone parent mother with ID. Although her siblings received supports from us, this mother had lived very independently. Her pregnancy evoked an understandable concern from her GP and a referral to both our agency and Child Welfare.  On this occasion, we hoped to keep mother and child together and work with TUSLA to create a model that would safeguard both mother and child. We formed a good working relationship with involved parties. So, what could be done differently this time?

From early pregnancy onwards, we supported the mother to attend pre-natal appointments, explore housing and income issues and family support availability, and to consider the responsibilities and challenges that go with parenting. Mother was extremely receptive to support and aware that child welfare may have concerns. Her parents were not in a position to help for various reasons.  Ideally, she wished to live with her baby in a council house located between her father’s home and that of a very supportive neighbour, who had been a support since childhood. She was also willing to consider an extended family support option. These were considered at inter-agency meetings with TUSLA, and it seemed like a good support foundation was developing between agencies. Importantly a sense of ‘trust’ existed. However, a premature delivery prompted an emergency response, a voluntary care order, and suddenly mother and baby were placed in a temporary fostering situation.

A lack of foster families meant the mother had to live away from her local community. Significantly, however, she was accommodated with her baby in the foster home. We advocated that this foster family would become a supportive learning environment, where mother and baby would be considered as a unit. TUSLA agreed. Mother’s wish to live alone with her child seemed to have real prospect provided we could develop appropriate supports. Once again however, we were presented with the familiar challenge, ‘demonstration of competence’.
Proving competency became difficult. Tensions developed between the natural mother and the somewhat older foster mother, with the former contending that she was not given sufficient opportunity to demonstrate her ability. The foster mother on the other hand suggested that there was a lack of motivation from the natural mother. Again, TUSLA began to assess mother’s competence, without support, in the foster home.
The aforementioned and understandable conflict between our role as parent advocate and TUSLA as child protector began to reappear. In an effort to ‘neutralise’ our role, we prompted mother to engage the National Advocacy Service who allocated a personal advocate.
As a pilot and by way of advancing mother’s wish, we reached agreement with TUSLA to allow mother and baby move to one of our residential houses one weekend each fortnight. The house was staffed by women who had young children themselves. A different perspective began to emerge and staff reported positively on mother’s capacity to parent with support. Gradually the supportive neighbour became involved and began to replace staff. Real possibility began to exist, until suddenly a child protection concern arose and a breakdown of trust occurred between mother and the concerned neighbour. The project came to an abrupt ending.
When we support people in other areas, for example in employment or a new activity, we accept the risks involved as a learning opportunity. Parents in general also take calculated risks with their children in order to promote growth and independence. Understandably, child protection agencies are extremely cautious about risk with children in care. It is this reality that ultimately brought this pilot into an abrupt ending, as child protection services are naturally conditioned to be risk-averse.
One last possibility would have resembled the traditional residential care model where potentially, mother and child would live in a house supervised by care staff.  This however, was deemed inappropriate by TUSLA as staff consistency could not be guaranteed and therefore against the child’s best interest.Today the fostering situation remains the only reliable option despite mother’s protestation.
This environment, while providing security for the child, continues to evoke mother’s concern that she is not given sufficient responsibility in parenting, and consequently she experiences disincentive. The foster mother on the other hand continues to report disinterest on mother’s part. Both are valid but there is inevitability about mother’s apparent apathy arising from the vicious circle in which she finds herself.  She has no goal, no incentive and no realistic prospect outside foster care. Inconsistent staffing in TUSLA’s Social Work departments adds to her plight.

Tim Booth, former Professor of Social Policy at Sheffield University, has spent a career researching the challenges facing parents with ID. He refers to the failure of services to bridge the support gaps that exist for parents with ID and suggests that professional practice and service organisations undermine such parents and heighten their vulnerability. Booth extensively highlights the same key factors we encountered. These include:

  • Presumption of incompetence relating to parents with ID
  • Focus on Deficiencies
  • Provision of confidence-inhibiting support
  • Lack of trust
  • Crisis-driven services
  • Child-centred focus, and
  • Poor assessments and lack of goal clarity.

The concept of ‘good-enough’ parenting implies an acceptance that nobody is the perfect parent. Parents with ID may well argue that this principle does not apply to them, especially when they come under the microscope of child protection services.  In fact, as Booth suggests, there is a risk that parents with ID are asked to demonstrate a level of competency higher than that expected of parents without ID.

Going Forward
Ironically, as they become adults the children in the above case are returning to their natural parents after care. While in itself this is not an indicator, it adds weight to the suggestion that we should be compelled to create a successful care model where agencies work together to create agreed missions. Legal support, although available to parents with ID, is often complex, difficult to interpret, and directive. A ‘mediation’ model similar to that which exists in family law, where parties are encouraged to work towards agreement, could facilitate better outcomes.

Parents with ID can successfully parent children with support. This we know. Many of these parents are not connected to ID services, and cope well with support from extended family for example. The notion that an ID agency and a Child Protection agency can ‘marry’ their respective mandates to provide a trusting nurturing environment, without facilitation, is unrealistic. Facilitation should focus on the substantive conflict that results from differing philosophy, and the emotional conflict arising from workers’ fears.

Booth points to research indicating that between 60 and 80 per cent of women with mild ID wish to marry and have children. The Assisted Decision Making (Capacity) Act 2015 will undoubtedly generate support for that right and provide a better culture and spirit, but a successful model demands shared ownership where all parties have child protection at the core, and a shared obligation to fill support gaps towards realistic ‘good-enough’ parenting.

Parents are encouraged to engage with all services from the outset, but they do this with the understanding that it is for purposes of support. The dilemma for the professional in the Voluntary body is that the child welfare/protection mandate that all the services are bound to, quickly becomes the dominant concern.

Booth promotes further research indicating that parents with ID can successfully raise children. We know they can, as many of us who have been working in services for a long time know children who attended special schooling in the past, who are now competent parents sometimes with very little support.

The current fostering model and training appear insufficient to meet the needs of both parent and child, and this would need consideration.

Reference:

Booth T. – Representing Children, Vol 13, No 3, pp 175-188

Author Bio

John ArmstrongJohn Armstrong is a Social Work Team Leader with the Brothers of Charity Services in Roscommon having joined the services in Galway in 1981.

  • Everybody has the right to a relationship
  • Relationships need time, trust and responsibility
  • Services and family have to help and support
  • Adrian tells us about his happy and loving life with his partner

People with Disabilities have a right to have a sexual relationship like everybody else.

The relationship should not be made a big issue because this about the both people in the Relationship and not family or Disability Services.

There needs to be trust between the people with disabilities who are in the relationship, and their families and disability services. But if the relationship is stopped or tried to be stopped, the relationship will continue in secret so it is better the relationship is out in the open with the support of family and disability services.

If family accept the relationship, so should disability services and respect the family and the person with disabilities’ decision because at the end of the day, the disability service works for the person with a disability not the other way around.

The people with disabilities who are in relationship should sit down with family and the disabilities services and talk about the right support and the rules when they’re in their services around relationships.

By the right supports and the right information like information on sex and how to have protective sex being given to the people with disability, the relationship will work out.

Like my relationship with my partner Emily who I met on a course in a disability service 5 years ago now.

When we first got together the Disability Service and Emily’s family tried to stop us having a relationship not only because both of us a have an Intellectual disability but also Emily’s family and the disability services thought Emily was naiver in the world of relationships then me which was untrue. That was the view of both families and the disability services at that time.

We both learned from each other along the way, and are more in love now than when we first started to go out together.  But both Emily and myself (Adrian) proved them wrong and the both families accepted the relationship.

When it came to the sexual part of the relationship we both took our time and did not rush and have both learned through the experience, and also that sex is not the glue that holds us together it our love and respect for each other that does.

As for the disability service, they did not accept the relationship and continued on trying to break us up, but both myself and Emily went to see the manager of the service who gave us their backing and under certain conditions, like we could not kiss or hold hands when on the course, or if we were in the same room during the Course, we could not sit beside each other when we were working which was fair enough.

It is two years since we left the disability service we both attended after we finished our course, and have moved on.

Most importantly, we are still together and very much in love and are planning to get a place together in the future when we both get employment.

This story is for Emily by your partner Adrian Noonan.

Author Bio

Adrian NoonanAdrian Noonan is a Disability Self Advocate/Peer Advocate. He is P.R.O. of Seasamh, the Inclusion Ireland Self-Advocacy sub-Committee, and also of The National Platform of Self-Advocates.

Deirdre Corby has sent in details to Frontline Magazine Ireland of a new programme launching in Dublin City University for people with an Intellectual Disability and others with in the field…

The School of Nursing & Human Sciences, DCU are launching a new programme in the area of relationships and sexuality for people with an Intellectual Disability.  It is open to all stakeholders working in the field of Intellectual Disability and is a graduate certificate course that aims to provide knowledge which is appropriate, accurate, evidence-based, up-to-date and free from discrimination, gender bias and stigma.  We are now accepting applications.

https://www.dcu.ie/prospective/deginfo.php?classname=DC675

Author Bio

Deirdre Corby PhD. Is a lecturer in Intellectual Disability Nursing at DCU.