The subject of NAMHI’s Parents’ Seminar this year was information—information gathering, the keeping of information and access to information. The Minister for Social, Community and Family Affairs, Dermot Ahern, TD, who opened the seminar, welcomed the participants to his home turf in Co. Louth. Chairperson, Ursula King of the Parents’ Subcommittee, introduced a bevy of top-notch speakers who led their audience expertly through the intricacies of the National Intellectual Disability Database (NIDD) and the Freedom of Information Act (FoI). Patrick McGinley, NIDD Coordinator in the Western Health Board, and Fiona Mulvany, NIDD Coordinator in the Health Research Board, explained how the database was set up, what information it contains, and how to gain access to individual records within it. Both speakers emphasised the significance of the database as a planning tool (and, incidentally, as a strong statistical reinforcement for learning disability lobby groups). Database information will also be a helpful tool in monitoring demographic and epidemiological changes. The Assessment of need document was produced for 1997-2001 and an NIDD audit has also been completed. Dr Verona Keane, director of the audit, reported that it found a need for a strategy to increase awareness of the database, improved staff training, the development of protocols and the review of guidelines used in the compilation of data entries. NIDD committees within health boards need to become more proactive; although there is a designated database coordinator within each health board, there should also be more decentralised information—to agencies and centres and to families via keyworkers.
Parents added their on-the-ground difficulties in getting access to information on the NIDD, giving examples of poor liaison and inconsistencies in current practice. During discussion, a considerable level of confusion was evident among parents, and dissatisfaction was expressed by several who had sought information on the NIDD from their area health board.
Eithne Fitzgerald presented the founding-minister’s-eye-view of the Freedom of Information Act (see also Frontline 36, 22) which has been extended (from 21 October 1999) to voluntary as well as statutory agencies in the learning disability services. Patients and primary carers now have the right of access to policy documents, care plans, personal files and the right to correct inaccurate information contained in personal files. The existence of the Act should make it easier to ask for information informally, with the possibility of ‘going the formal route’ if questions are not answered. Ray Smith of the FoI section of the Department of Health and Children and Gina Magliocco of the National Federation of Voluntary Bodies, explained how learning disability services had held staff training courses to encourage uniform procedures and user-friendly record-keeping, to prepare themselves for the provision of information under the. The National Federation has produced an explanatory booklet Freedom of Information Act 1997: A guide for staff working in voluntary bodies, and a briefer information leaflet for families. The Department of Finance has produced a document entitled Guidance notes on access to records by parents/guardians … under section 28(6) of the Freedom of Information Act, 1997 (available on the Department’s website, www.irlgov.ie). There is also a working party considering how best to advise bodies to assist people with disabilities to access information.
Many further points of interest were made during the seminar, both about freedom of information and the intellectual disability database. Fewer than 100 people attended the Parents’ Seminar in Dundalk, and it was good to read in the November NAMHI Newsletter that a repeat of the seminar is under consideration.
Throughout the world, people with intellectual disabilities are dependent on family carers. This is especially so in childhood, but in most countries their care-giving extends well into adulthood and often for a lifetime. What is remarkable is the exemplary care that most families provide to their much-loved relatives despite having little prior experience of disability or any formal training. They have to be available 24/7, often with few breaks and irrespective of the toil it takes on their emotional well-being and financial resources. They are the unsung heroes in creating better lives for Irish people with disabilities and yet I fear that their enormous contribution is taken for granted as health and social care services become more professionalised.
Ironically, austerity cutbacks often hit family carers hardest; they have to struggle on when short breaks are cut back, day centres are full and a promised place in residential care evaporates. But too much tension causes ropes to snap. I fear that we professionals are in danger of losing the trust and respect of families, many of whom are better educated, more articulate and demanding than those of a previous generation. Positive action is needed throughout our service systems to forge new partnerships with families so that the rights of people with intellectual disabilities to a fulfilled life are achieved.
The lessons from history
Fundamentally we need to loosen the shackles of outmoded ways of thinking. In common with many other countries, today’s Irish services were premised on taking over the care of people with disabilities from their parents. Hard-pressed families in the 1930s onwards were encouraged to entrust their disabled relative to religious orders or medical personnel based in hospital-like settings and ongoing contact was mainly through ‘visits’. This model of care dominated for some 50 years—right up until the 1970s—but the vestiges of it still persist to this day, and at a high cost to the state both financially and in terms of reputation with ongoing revelations of past and current abusive practices.
However, around the mid-1950s some brave families started to question the accepted wisdom of the day and formed local associations that started to offer community clinics, preschools, schools and (later) day centres and group homes. Parents lobbied government to fund the staff of these new-style services and over the succeeding years a plethora of different professionals were recruited with specific training and expertise to meet the particular medical, therapeutic, educational and social needs of children and adults with intellectual disabilities. As these newly formed organisations grew into multi-million Euro enterprises, the influence of parents waned. These services too have flourished for over 50 years, but as had happened with institutions, questions began to be asked from the 1990s onwards about their value-for-money, their accountability and their response to individual needs and aspirations. Hence, in 2015 I suspect we are at a tipping point when a new philosophy starts to become more dominant in guiding service provision: namely the philosophy of ‘personalisation’. This bring about radical change to the ways in which service supports are delivered over the coming decades, in the same way that community services transformed institutional care. It will not be merely a repackaging of old wine in new bottles: this new wine will destroy the old bottles.
Families will have to be central in personalised services. Indeed, from their perspective, they always have provided personalised care to their relative. Usually it has been services who have treated children and adults as part of a group rather than as individuals. Thankfully in recent decades we have seen the emergence of family-centred practices. This began in the 1980s with home-based early intervention services led by visionary psychologists, therapists, social workers and educators, and it has spread through inclusive schooling, short-break provision, supported employment schemes, leisure activities and personalised living options.
In all these initiatives, the involvement of the family has been central to their success. They have been the sustainers, if not the instigators and drivers, of new ways of supporting people with intellectual disability. Many of these new schemes have been subjected to thorough evaluation and research—often far in excess of the scrutiny to which traditional services are exposed. I have been privileged to lead on many of these evaluations in both parts of Ireland, as well as internationally: the results of the evaluations are detailed in many reports and articles. Reflecting back on these findings, three strategies contribute to the success of personalisation. They cost little to implement and are embarrassingly obvious. Indeed, some may question the value of spending thousands of euros on research to discover them. In defence, I would simply state many millions more are spent every year in services in which these attributes are not present and arguably not even expected.
The relationships that professional workers have with a person with intellectual disabilities, their families and with one another are undoubtedly the number one priority. Central to this are the human qualities (such as warmth, concern, friendliness, sense of humour, commitment) that each brings to the relationships. They weigh much more than any qualifications or expertise. These personal characteristics may be honed through training, but they cannot be taught. Ironically, I have seen these qualities more often in staff working in the lowest salary grades than I have in highly paid managers and clinicians. Recruitment practices, job specifications and supervision sessions all need to emphasise these human qualities and how they are deployed, especially in times of distress, dispute and disappointment. Active listening to people is the key to relationship building—and maintaining contact though phone, text or social media is essential and can cost little in terms of time. Paid supporters will find it easier to build these relationships in natural locations such as the family home, rather than in clinic settings. These contexts also enable a more complete assessment to be made of the family’s needs as well as those of the person with the disability.
The most common complaint I have heard over the years from families is a lack of information and poor communication. For many families, coping with disability is a totally a new experience. Staff need to be proactive in giving information to families and talking through what it could mean for them. Likewise, staff need to respond speedily to family’s request for information, even if it starts with ‘I don’t know, but I’ll find out.’ Being honest about one’s ignorance can apply, especially when clinicians are asked to speculate about the prognosis following their assessments. Likewise differences of opinion between parents and professionals need to be respectfully negotiated and accurate information about choices and options can assist this. This is particularly important around transitions between services. The reasons why families may be refused services need to be carefully explained and set in the context of alternative options. Families still talk of having to ‘fight’ to get the services they require.
Families bemoan the number of people and agencies with whom they have to deal. Their lack of coordination frustrates parents as they retell their story and deal with clashing appointments and conflicting advice. Well-tried solutions start with having a ‘key-worker’/’coordinator’ for each family, through whom communications from different professionals and agencies can be channelled. Also all the parties need to contribute to a written and updated family-centred plan that embraces all the supports provided to the person with a disability and to the family, and which is held by the family and shared with all parties to it. However, the thorniest coordination issue is often around service transitions: from child to adult services, for example. The lack of forward planning and the dearth of communications between staff in the different services is a persistent complaint that speaks volumes about existing mindsets and service structures.
And there’s more…
Of course there are many other strategies that will transform present service provision, such as personalised funding arrangements, greater use of mainstream rather than specialist services, and the growth of advocacy by persons with intellectual disability, to name but a few. Equally, societal changes will put extra pressure on families: the increase in single parenting; the contraction in extended families and in neighbourhood supports. Underpinning all of this will be increasing numbers of old and very old persons with an intellectual disability, and more children with complex needs surviving into adulthood. Our already stretched health and social care budgets will not be able to afford the types of services currently provided. A continuing challenge will be to ensure that those with the greatest need receive the most support, as will be finding ways of providing personalised care when families are no longer available or able to do so. The agenda may be daunting, but it is manageable given the passion, creativity and expertise that thankfully still exists in Ireland. This, over the years, has been reflected in the pages of Frontline and hopefully will continue to do so in the years ahead.
In the coming decades families inevitably will need to become more self-reliant in the sense of taking control over their lives, but being actively supported in so doing. We have growing evidence internationally from Canada, Australia and Scandinavia, as well as from Ireland, that many families are not only willing to take on this role but that in doing so, benefits are brought to everyone and most importantly to their disabled relatives. The bigger question is whether we can find the people, the strategies and the systems that will provide reliable and effective support to families throughout our island. I am confident that we will, provided that we change current mindsets among families and service personnel. Already a good start has been made, but the best is yet to come.