The author raises concerns about what will happen to her daughter with Down's syndrome when her mother is no longer around to support her. She suggests one helpful solution, a 'Wellness Book'. The article is followed by two commentaries from different perspectives.

Elizabeth Blackwell (UK)

The following article is written by the mother of a person with Down's Syndrome who states her concerns, shared by many other parents, about her child's continuing well-being when she can no longer be supported by her mother. At the end of her article she describes the 'Wellness Book' which contains information that other people will need in order to provide her daughter with health and social care.

This article is followed by two commentaries from different perspectives. The first commentary is by Ruth Beckmann, Information Officer for the Down's Syndrome Association who, while agreeing with Mrs Blackwell on many points, strongly disagrees with her on others. The second commentary is by Gary Butler, a service user and Training Adviser at St George's. Gary remembers hearing his parents worrying about what was going to happen to him when they were no longer around.

The three authors throw light on what is a difficult and often distressing subject.

I write as a mother and carer of a thirty three-year old Down's Syndrome daughter of whom I'm fond and proud.

All through her upbringing we as a family have made great efforts for her to become semi-independent and to bring joy and fulfilment into her life. For several years she has been a graceful dancer with a performing dance company, has kept her paid part-time job as a cleaner and has lived in a small flat on top of our garage. If she now had a monogamous boyfriend, all would be well.

The dreaded 'distance veil' which I so often saw in her eyes when she was very young, has gradually been lifted: now she separates herself much less from her surroundings and consciously lives in our midst albeit in a slower track. Still an innocent, she plans for the short-term, but leaves the future to others. She therefore continues to need guidance, reminders and some assistance. I know that, without me, her life would neither be as eventful, nor would her lifestyle be as wholesome and glamorous, unless, of course, someone stepped into my kind of shoes. Will there one day be such a person? Like most parents, I have my fears.

Due to her independence skills, her dignity, and her readiness for activity, my life with her is easy compared to that of some other carers I know. However, maintaining mental stimulus, engineering her social life and watching over her health can sometimes keep me busy.

My daughter's health is of primary importance to me. In her case, and that of other Down's Syndrome people, preventative health care and swift treatments are a must.

  • Has she not already started out in life with a serious disadvantage? Due to an extra chromosome and an 'unfinished' body, there always loom the effects of her diminished physical resilience. I think of infections, the sudden loss of energy, the aching legs and feet, the thin, delicate skin.
  • An unresolved and even a simple, lingering health problem can so easily invade all areas of her life and bring down its structures carefully built up over the years, though they will always be somewhat precarious. Having to revert to care threatens acquired independence skills, confidence suffers with a lack of outside involvement and gone are the delicious days of freedom from mum with money in one's pocket!
  • When treatment is slow in coming, a college course may be interrupted and the person is immediately cut off from friends. The long hoped and trained for job may be lost never to be retrieved again. Chances have passed while waiting in the hospital queues for referrals, results and remedies. As job opportunities in particular are hard to come by, a setback of this kind is serious and sadly always affects the lives of two people. It will take a long time to re-establish the former quality of life. It has happened to us both.

Now that there is a trend for social inclusion and ghettos for disabilities are often frowned upon, I see the need to help make this high aspiration work. Soon there will not be anywhere else to go! Without some extra input true inclusion remains an unrealistic dream and my daughter would risk only being grudgingly tolerated. A little quaintness, a little slowness might be forgiven - she might even endear herself with her warmth, her touching earnestness and the ability to diffuse tense atmospheres - but would people take kindly to being served a meal by someone with a persisting skin rash? And can a job be sustained if repeated ear infections, an inefficient hearing aid or the long waiting for one inhibit the understanding of important instructions? Here I have trembled a few times when my GP mentioned the word 'referral'. Apart from 'wait' it also spelt 'start again'.

As to the hearing aid, my story is not too good. In despair, I finally went private, which used up all my daughter's savings of £2,000. However, she now enjoys a small digital hearing aid, which is natural sounding, non-allergenic, properly fits inside her small ear and never drops off. It is her lifeline.

While I make a strong plea for prompt access to health care when hospital specialists and technicians are needed, I also take seriously my task in providing preventative care, in teaching my daughter the same and in using the good advice of my GP.

I know the difference such care can make to her performance, resilience, good mood and good looks and am delighted at her co-operation, particularly where a fresh vegetable diet, vitamins and minerals, enough sleep and her regular independent visits to the fitness centre are concerned. Although Down's Syndrome people are prone to be overweight (and therefore can develop diabetes), she has so far managed to keep matters in reasonable control. Is this due to my frequent reminders about calories or is she aware of the static size of her dance costumes for the oncoming show?

There is no knowing what effect my own absence coupled with the prevalent principle of self-advocacy would have on her healthy living. When I see older disabled people who no longer live with a watchful parent, I am sometimes saddened by their bad teeth, skin eruptions, sickly-grey looks and more often still by their obesity. This suggests that no-one has intervened and I ask myself:
a) whether the carer is only obliged to follow very limited guidelines regarding health care
b) whether there is an assumption that all these ills are part of the intellectual disability and must therefore be accepted
c) or whether the client's freedom to choose is to blame for this neglect

If it is the latter, I would say that this particular freedom is not in his/her interest and can only lead to the loss of other freedoms, like having to keep going to the doctor. Furthermore, would we risk giving such generous freedoms to a ten-year old? I also fear that the less pleasant the appearance of the person with disabilities, the harder it is for them to be included. Then loneliness and depression may follow. Another health issue!

Parents like me would gladly abdicate their responsible role if the carer taking over from them were either to take all health issues in hand or would liaise with our hoped-for new professional, the 'Health Facilitator'.

  • He/she would be appointed by the Health Authority and a group of people with disabilities would be allocated to her/him.
  • He would monitor their health and mainly come into play at crisis times when an advocate/articulator with inside knowledge and connections is needed to speed things up, to point out ineffective care or supplies and find appropriate specialists.
  • If ordinary health matters remained the responsibility of the carer, extra costs for our occasional and shared 'miracle worker' would be quite modest.

The carer would also see to a simple, monthly routine check-up by the GP. I could imagine my daughter initiating this herself as she has a charming GP with the gift for extracting from her the detailed descriptions of her ills. She likes her interviews.

But what of the future, when I as her main spokeswoman am missing, the people involved are new, and regulations and points of referral have changed once again?

It occurred to me that the best I can give her to explain herself as an important individual is a 'This is your Life' kind of book. It would be called:

The Wellness Book of R.B.
a person with Intellectual Difficulties.
Covering aspects of health, personality and needs.

This book, with the potential for being updated, would accompany her through life and whenever she needs health and care services. All by herself she would not reliably supply enough factual information.

Because of its classified entries any one newly involved with her would find it a time, money and anxiety saver.

  • Repeated health issues being highlighted would facilitate diagnosis and could prevent the long search for the right medication or aid. This because an entry of a proven remedy together with a date will have been made.
  • Lengthy assessments would be minimised and misconceptions regarding Down's Syndrome would not be sustained since real information about this person with Down's syndrome is at hand.
  • Therapies, aids and creams which have been tried, tested, found useful or otherwise will be listed in order to encourage their use or warn of 'blind alleys'.
  • Because her life will move on, this book would have to be in the form of a ring binder to which new pages in the same format can be added for new entries. There would also be sleeves in which to slot a prescription, clinic card or the letter of a therapist.
  • However, the initial pages compiled by me, who knew her and her origins best, should never be removed when new ones are inserted. They should continue to be a point of reference. When reading about her abilities and familiar lifestyle, those caring for her may find vital clues to help her should she ever be under emotional and psychological stress.

This wellness book is not intended to compete with any medical records the details of which one prefers to be confidential. It should be seen as a shortcut to getting an overall view of the health needs of a person who does not make herself heard as we do. To avoid delays, it should point to where and when she last received effective care.

My daughter will like this book and it should always be hers. While consolidating in her mind who she is, the page on proven self-help will remind her of the contribution she herself can make to look good and feel good.

The author wrote this article, including a sample page of the Wellness Book, especially for the website. Click here to see the sample page.

COMMENTARY ON THE WELLNESS BOOK BY ELIZABETH BLACKWELL
Ruth Beckmann

Mrs Blackwell makes some excellent points in her article, emphasising with great clarity the need for a pro-active, preventative and comprehensive approach to health care for people with intellectual disabilities. The 'Wellness Book' described at the end of the article would be an invaluable aid in providing healthcare consistently and thoroughly. A document of this kind is essential to avoid stress and disruption when meeting new carers. It could include information on abilities, communication and preferences. To avoid a proliferation of documents (which are then less likely to be used) it could be combined with the person's Health Action Plan.

The author also raises important issues about the role of the social care worker in promoting such an approach. Some of her points are rather contentious, and where I disagree with her strongly is in her suggestion that the principle of self-advocacy may be detrimental to health. I recognise however that her viewpoint is rooted in deep concern for her daughter and other people with intellectual disabilities. It is also a view that I have encountered in other parents, and one that merits further examination and discussion.

A central and undeniable theme of the article is the impact that even relatively minor health problems may have on qualities such as mood, energy, appearance, self-esteem and independence. Mrs Blackwell also quite rightly points out the corresponding impact on the carer's quality of life. It is worth reiterating these points as there are still many cases of basic health issues, such as dental care, being overlooked. Disturbingly, there are also instances where health problems are dismissed as unimportant, or too difficult to address, as in the case where it was suggested that a woman with Down's Syndrome in her 30s could not be fitted with false teeth, as she 'would never cope with them'.

Given this background, it is not surprising that Mrs Blackwell is anxious about her daughter's future health care. It is important to remember that good practice exists as well as bad, and it is not always the case that people with intellectual disabilities are healthier when living with a family carer. One study into obesity showed that people with Down's Syndrome were more likely to be overweight when living with family than in a group home [Rubin et al 1998]. Nevertheless, Mrs Blackwell is speaking from personal experience when she describes a level of neglect that is completely unacceptable. The author offers three possible explanations. The first two concern poor understanding of health and intellectual disability issues on the part of carers. Such situations undoubtedly do arise and need to be addressed through the maintenance of social care standards, including thorough training for staff; in this respect I fully endorse Mrs Blackwell's position.

Mrs Blackwell also suggests that the principle of choice may lead to neglect. I would argue that, on the contrary, empowering people with intellectual disabilities to advocate for their own needs will go some way to redressing health inequalities. Furthermore an authoritarian approach to care is no guarantee of good health. On the other hand, self-determination does not mean that people have to initiate all health-related activities themselves, and many people require greater support than they are receiving.

Mrs Blackwell is not alone in her concerns. More than one parent has asked the Down's Syndrome Association what law they can invoke to force carers to restrict their (adult) child's diet. One reported that when he spoke to his daughter's keyworker, the reply was that to do so contravened the human rights act.

People with intellectual disabilities may have difficulty in understanding health information, and in making long-term associations between lifestyle and health. In extreme cases this may lead to people endangering their health. How is the care worker to respond in these situations? Carers have a duty to ensure that health needs are assessed, and that any concerns are addressed. They also have a duty to respect decisions made by the service user, with any exceptions detailed in their care plan [Department of Health 2003]. At times there may be a delicate balance between these two responsibilities.

There are also purely practical issues to consider. It is extremely difficult to control a person's diet without their consent, unless you also withhold their money and prevent their friends from giving them food. Even if this was possible, imposing control may reduce self-esteem and motivation, and will only work as long as that control remains in place.

Rather than reverting to a paternalistic model of care, a more complex response is needed. Intervention can be carried out in a respectful way that enhances the person's quality of life and self-esteem. Improving understanding of health issues amongst people with intellectual disabilities and their supporters is one aspect. Looking holistically at people's lifestyles is another. Another study showed that people with Down's Syndrome who had more opportunities for socialising were less likely to be overweight [Fujiura 1997]. In addition, it is important that food is not the only aspect of a person's life over which they have some control.

An assessment of the person's capacity to make informed decisions may also be needed. The recent Mental Capacity Act (2005) gives clearer guidance on this than used to be the case, but it will still be a difficult process. For the few who are unable to do so, it is of course appropriate for the carer to make judgements about diet and similar issues.

However, in many cases, having an intellectual disability need not prevent someone from making meaningful and informed decisions about their life. People with intellectual disabilities have the right to make choices wherever possible, including (like the rest of the population) unhealthy ones. All of us make compromises in our choices, and as long as a person understands the implications of their choices, then we must respect them, whoever that person is.

REFERENCES

Department of Health (2003) National Minimum Standards Care Homes Regulations: Care homes for adults (18 - 65). London, The Stationary Office

Rubin SS, Rimmer JH, Chicoine B, Bradock D, McGuire DE (1998) Overweight prevalence in persons with Down syndrome. Mental Retardation 36, 175 - 81

Fujiura GT, Fitzsimons N, Marks B, Chicoine B (1998) Predictors of BMI among adults with Down syndrome: the social context of health promotion. Research in Developmental Disabilities 18, 261 - 74

Ruth Beckmann is Information Officer of the Down's Syndrome Association.

COMMENTARY ON THE WELLNESS BOOK BY ELIZABETH BLACKWELL
Gary Butler

This article is intriguing. It is written very frankly from a mother's point of view. It points the reader in the right direction and includes social, ethical and biological views of a person with a disability.

In the first place, doing a Wellness Book would help parents to gain insight into their own child's life and into what they don't understand about their son or daughter. This book is kind of a matter of fact description of illness or problems that the daughter's got. It gives something that you wouldn't find in a medical file kept by a doctor or psychiatrist. It helps you to see the person, not the client.

I like this because it's based on reality. There's no jargon used or medical terminology. It's the mother's point of view of her daughter. I understand why she is worried about what will happen to her daughter. I used to hear my parents talking about me, worrying about who was going to look after me when they died. When my mother died the local social services set up a support system for me. I think a Wellness Book would have been helpful for my support team. Better than that dull old paperwork of medical notes. You should see my file. It's like the Yellow Pages, three times over!

This article was written in 2003 and first appeared on the site in 2005.