In her survey of parents of school leavers with learning disabilities (Listening to parents. 1996 Dublin. UCD, Family Studies Centre), Bairbre Redmond asked what services they felt they would need in the future; 94% wanted ‘practical and legal help’. (It was the most often expressed need, equalling ‘the opportunity to meet staff’). It may seem ironic that the most persistent question asked by parents–‘What will happen to our child when we can no longer care for him/her?’–is matched by consistent inaction in seeking answers. Redmond calls it ‘this combination of concern and inaction’. Al Etmanski of the Canadian group PLAN (see p. 19) hits the same nail firmly, referring to parents’ love/concern for their child’s future and fear of that unknown future which paralyses them and prevents effective action.
The current issue in this Frontline confronts readers with ‘What will happen?’ and attempts to demystify the complex issues of wills and discretionary trusts, inheritance and guardianship, and possible accommodation options–all facets of the necessary planning to secure, as best parents can, for their child’s future. Future planning still remains problematical for families; no magazine article can answer all the questions or solve individual dilemmas. But facing up to a question is the first and often the hardest step to finding a solution. We hope the general discussion here will encourage parents to think about and discuss this issue with their child with all their children, and to pursue the matter with the cooperation of service providers and the advice of other concerned professionals.
Future planning presents another important arena for service provider/family partnerships. At a minimum, parents’ evenings and open days can provide a forum, with guest speakers and/or staff facilitation, for discussions on future housing options and legal and inheritance issues. Siblings must be actively included; too often they remain ‘outside the loop’, although plans under consideration may assume their significant involvement in the future.
PLAN in Canada and the Friendly Trust in Wales (p. 20) are examples of personal future planning methods devised to suit local lifestyles. Here in Ireland, those of us whose children have received a good and responsive service over the years may have come to rely too much on our service providers, expecting them to anticipate our child’s future needs, and to do the planning for us. Irish parents and siblings need to find innovative ways to grasp the same nettle, to become more proactive in securing their family member’s future
–for everyone’s peace of mind and, most importantly, for the optimum quality of life for their child with a disability.
‘Happen’ is essentially a passive word, like ‘chance’; it also carries a sense of inevitability. The time will come when the most caring and vigilant parents are no longer able to care for their adult child with a disability. With the assistance of good professional advice and the cooperation of responsive services, parents can transform passive to active–they can make it happen.
They’ve been a long time in the hatchery–what we called the ‘musical chairs period’ in the autumn of 1998 has been even more protracted than we anticipated–but we welcome the new brood of authorities with brimming expectations: the National Disability Authority (and Comhairle) and, in the Dublin area, the redesigned Eastern Regional Health Authority. We hope (is that too fatalistic a word, after the above paragraph?) that we will quickly learn how to negotiate the approach roads to the new service-superhighways to be overseen by the NDA and the reconstituted area health authorities.