Review of the Report of Disability Policy

The recently published Report of Disability Policy Review is an extensive document that encompasses ideas for change in serving the needs of people with disabilities in Ireland. The principal objectives are admirable: better access to services, wider environmental accessibility and person-centred supports. The report is presented in an almost hypnotic language of positivity. But Mary de Paor remains confused, doubtful, and even cynical about some of its prescribed directions for the future.

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Disability services

The Policy Review criticises current Irish disability services as ‘segregated group settings’ which ‘purport [my italics] to use Person-centred planning’. I have a more positive view of the services that I know well, ones which have adopted the CQL system of outcome measures, and whose staff members ask individuals what they want, and then advocate for them—to find part-time work, to travel abroad, to live independently, to join local clubs. There has been a palpable shift in staff and organisational thinking, from programmes being offered to Person-centred timetables and supports. There are, of course, some headline-grabbing lapses and limitations in services, but it is a bit rich that the government should hang organisations out to dry (so to speak) when we still have no statutory standards in place—only staff recruitment embargos. As the Report states, services have become over-professionalised, but this has primarily developed because of the qualifications required by government and statutory salary scales. Professional education is certainly valuable, but life experience and personality attributes may ‘qualify’ a staff member to be far more effective, depending on their work role.

Funding of disability services

How can disability services be reconfigured to provide individualised supports to individuals, with financial efficiency and accountability? Individualised funding is the intended route, and it sounds very tempting. But there are caveats: individuals and their families will require a choice of accessible services, and reliable information about them, or a brokerage system to assist those unable to undertake evaluation of the available service elements. Individual entitlements (albeit need.assessed) will be subject to cutbacks, because of ‘limited resources’, even more easily than reduced budgets for service organisations. (The multidisciplinary assessment of need process for children with disabilities has been problematic and often disappointing for families when needs are not matched with services.)

There are myriad challenges here that I cannot get my head around: how services can be planned and assured in the uncertainties of a demand-led market. Then there is the upheaval in state funding systems. There will be considerable costs involved in the assessment of needs process, in the administration and monitoring of individual budgets, and in establishing an equitable brokerage system for access to services.

Most alarmingly, the first step toward the government/HSE’s attempts to approach these funding changes and challenges seems to be competitive tendering between existing and new services. This is primarily a financial exercise, neither holistic nor consumer-driven, and a successfully tendered service might have no track record of service-quality. Most alarmingly, if the service previously chosen by an individual fails in the tendering process, their ‘person centred’ service will be totally nullified— no continuity of service, no familiar service-location, staff or routines.

Mainstreaming

Social inclusion of people with disabilities is ‘built into’ this system because these are the same supports and services provided to the general population. In addition, because there is less duplication of services there is significant potential for greater cost effectiveness. The Review posits that individuals should avail of mainstream services, in preference to a disability-specific service.

Although desirable, this politically-correct assumption may not be always be valid in individual circumstances. ‘Tailored universalism’ will often require specialist expertise from supporters who are familiar with the person with a disability, in order for them to live as fully as possible within their local community. I suspect that the ‘significant potential’ for cost-effectiveness in near-total mainstreaming is unlikely to be realised, unless there is a significant dilution in the level of individual supports.

Access to health services is an example of mainstreaming, not yet available for those with a disability. There are still very few real primary care teams across the country; in many cases a designated ‘team’ is a loose-paperclip of professionals, rather than the multidisciplinary one-stop-shop advertised in Department of Health policy statements. In order for people with intellectual disability to avail of appropriate primary care services, as indeed they should be able to do, there must be radical improvements within the teams—to include local RNID nurses, speech therapists, OTs and nutritionists. When an acute condition requires their hospitalisation, persons with profound disabilities must often rely on a staff member from their disability service to provide the specialist care and feeding support that they need.

The ‘whole of government’ approach needed to interlink the universal-access policy of the Review simply does not exist—even 20 years after A Strategy for Equality. Just one example has been the difficulties in meeting the supported.employment needs of people with intellectual disability. FÁS has been comfortable only with individuals who can undertake full-time work, with only short-term job-coach assistance. Several disability services have developed effective supported employment services, through disability awareness programmes and liaison with local employers.

Another example (something that the Policy Review finds a bit mysterious) is that many children are returning to special schools, particularly when they reach secondary education. The mainstream education system appears to have failed to provide the necessary supports for some (fortunately, not for all) pupils with ‘special needs’, and they seek the expertise of teachers in special education. And of course, the current reduction in the numbers of special needs assistants in schools is likely to aggravate this situation.

… must a residence be custom-built to meet the serious medical needs of a dozen older individuals be reconfigured so that only four persons are in a setting, requiring high-level clinical staff, Parker beds, hoists, etc? For that matter, should elderly people (in general) be offered a place in a well-designed and high-standard nursing home, only if it serves fewer than ten (eventually four) residents—lest they be placed in ‘a congregated setting’?

Congregated settings

I think there is still a basic lack of realistic thinking about how disability services can best be provided. In the desire for mainstreaming, we must not deny that people with intellectual disabilities may have particular needs which are best served by a specialist service, or even [heaven forbid] in a congregated setting.

For example, must a residence be custom-built to meet the serious medical needs of a dozen older individuals be reconfigured so that only four persons are in a setting, requiring high.level clinical staff, Parker beds, hoists, etc? For that matter, should elderly people (in general) be offered a place in a well.designed and high-standard nursing home, only if it serves fewer than ten (eventually four) residents—lest they be placed in ‘a congregated setting’? ‘Tailored universalism’ should mean that some residential settings for some people with disabilities will determine a larger setting—where the particular needs of frailer people with disabilities may receive the care that they really need. In some cases, four people in a house may be seen as being more isolated that six or eight people—if (an important if) they get along well together and share similar support needs. And someone might be very isolated living in a solo.apartment (even with smart technology), rather than sharing cooking and living skills in a family-size home with friends with similar interests—and probably a similar disability? Once again, where is our common sense?

In conclusion

The Special Olympics World Games in 2003 received massive support and participation across Ireland. People with intellectual disabilities rightly held their heads high. Nearly a decade later, we remain uncomfortable that people with disabilities might travel together on a bus or to an event. Of course, individuals may prefer to go out on their own, with their families or one or two ‘normal’ friends, but what’s wrong with a group, if they enjoy being together? We accept busloads of exuberant football fans— even summer busloads of loud continental students! But do we honestly accept disability? Hmmm. I sometimes think we are still, very mistakenly, ashamed of intellectual disability—hence the continually amended politically-correct terminology. Why should people with a disability not avail of a specialised service, if it best serves their needs and wishes—just because it is a ‘disability service’?

… mainstreaming does not mean that there is a ‘one size fits all’ approach to the provision of services and supports. All services (health, education, transport, employment etc.) must adopt an approach of ‘tailored universalism’ and adjust their services to accommodate people with disabilities (Report of disability policy review 2011, p.54) Despite this reassuring statement in the policy review, I fear the danger of ‘throwing the baby out with the bath water’ unless a great deal of progress— within government departments, administrative practices and across Irish society—takes place before the wide.reaching changes recommended in the Policy Review are put into action. I think we have a lot of work to do before we can confidently proceed as the Policy Review suggests. Paraphrasing Fagin, I think that reviewing the situation, we’d better ‘think it out again.’

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