Henrietta’s story – how one family is affected by severe disability

Henry Spink passed all the standard postnatal tests. But although he appeared healthy, he did not respond normally. Henry remained floppy, slept constantly and would not feed. At nine months he was diagnosed as profoundly disabled. In education terms he has PMLD – profound and multiple learning difficulties. He shows all the symptoms of severe brain damage, yet his brain scans are normal. He is a medical mystery with symptoms bluntly diagnosed as ‘global developmental delay’. He cannot walk or talk and has little muscle control.

Freddie, Henrietta’s second son, was born with half his diaphragm missing and severe internal damage. He was on life support for the first six months of his life and has had a series of major operations to rebuild his oesophagus, dreadfully scarred from years of constant vomiting. Freddie is more mobile and communicative than his older brother, but has autistic tendencies and developmental delay.

Despite being faced with two small children with dauntingly complex difficulties, Henrietta would not accept that the boys would have no bright or normal future. It was the beginning of a ten-year long search for answers and alternative approaches to treatment – and the beginning of the internationally recognised charity The Henry Spink Foundation.

Having two profoundly and differently disabled children is unusual – but the experiences of the family are not. Years of broken sleep, medical emergencies and endless domestic drudgery have caused severe emotional and financial strain. The Spinks faced lengthy battles with their local authority for basic help, equipment and education. They also led a ground-breaking legal case in pursuit of agreed statemented provision for the boys. Read more here

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A fight for the right care and education

The struggle for basic equipment and help is one many parents will recognise. Lengthy bureaucratic procedures, different departments not working together and means testing often only produce too little too late. In 2003, the Audit Commission’s report Services for Disabled Children eloquently exposed these difficulties through families’ experiences and made numerous recommendations for stronger leadership and co-ordination. Read the report here.

A struggle for help at home

The Spinks’ experiences are typical of the frequently tedious and soul destroying battles parents face. They do at least six loads of laundry every day. Three assessements finally granted 8 hours’ help with washing – annually.

Both children need to be lifted and both are taller and weigh more than their mother. Their local Council would not provide a chair lift as Henry, who is virtually helpless, could not operate it himself.

Twice a day, both boys and a heavy wheelchair have to be manoeuvred in and out of the house which is reached by a flight of steps. After 10 years of asking, the Council gave the family a ramp – it did not fit and Henrietta could not lift it. When the company who supplied it eventually came to inspect it they agreed it was far too heavy to assemble several times a day and recommended that it should be permanently screwed to the wall. This was prohibited on the grounds that it was so steep it might injure callers such as the postman.

An occupational therapist and independent assessor both agreed that the family urgently needed a bath hoist and ceiling host to get Henry in and out of bed; they were amazed the family had managed so long without these. But such equipment is counted by their Council as a home improvement– just like a loft extension or a conservatory – and thus subject to means testing so the Spinks cannot afford to install them.

The Spinks continue to battle for a care package. They have gone through lengthy bureaucratic processes and assessments since 2000. In 2004 they have reached a point where independent assessors approved by the High Court have assessed their needs as far greater than their own estimates. If there is no satisfactory response from their Council their next step is to seek a High Court emergency injunction.

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Confronting special educational needs

View IPSEA Sunday Times article

Getting what the Spinks felt was appropriate education for their sons became a costly three-year legal battle with their local authority. They re-mortgaged their house and their business suffered as they fought to secure a school place for Henry and the 15 minutes’ speech therapy a week for Freddie specified by his statement. Only with an exhaustive campaign of letters, lobbying and media campaigning did they eventually break through the numerous brick walls they encountered.

A long delay in producing a final statement for Henry meant he was left with no school place at all and had to be looked after at home for a year while Freddie was also desperately ill. Meanwhile the Spinks prepared for their anticipated special needs tribunal with expensive independent educational reports and the hiring of a barrister. At the hearing they listened as local authority officers presented a case they did not recognise. Henry had been re-assessed as having ‘severe’ rather than ‘profound and multiple’ learning difficulties. The specific therapies he was recognised to need had been omitted. Facilities which Henry needed were claimed for a school which the Spinks knew, and could prove, did not have them. The tribunal found in favour of the council’s view of the right school for Henry which was claimed to be cheaper than the parents’ choice.

Through dogged perseverance and a minutely detailed investigation, the family obtained true costs for the school they favoured and proved it was the cheaper option. An appeal tribunal finally accepted the Spinks’ calculations which completely reversed the picture the local authority had painted. The happy outcome was a place for Henry at a school with reasonable facilities and on-site physical and speech therapy.

This one case took three years to resolve. The Spinks children are among 1032 with statements of special needs in their local education authority area. Their experience is not unusual. The system which is meant to ensure that children with learning or physical disabilities, or behavioural problems, get an appropriate education often throws parents and local education authorities into conflict.

A legal first: fighting for statemented provision

Realising how many other families were trying to win the same battles to get the provision agreed in statements, and how many more were simply too exhausted or intimated to try, the Spinks helped spearhead a ground-breaking legal challenge. A class action in the High Court was formed by 25 families to compel the local authority to make the provisions listed in the children’s statements. It covered children who never had annual reviews, who were excluded from school because statements were late or incomplete, or who have never had basic therapies. All the families had documented proof of their entitlement to specific, basic provision which had never been delivered. All were worn down by the acute stress of a complex system which generates bitter emotional struggles.

On the strength of their case, legal aid was granted. However, as the Council were able to come up with an agreement with the families in the action which meant that more legal procedure could be avoided, a high-level judicial review was averted. While glad that the outcome prevented public money being spent on court cases, the Spinks were saddened that it took such a considerable legal challenge to produce what had already been agreed as the children’s entitlements.