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Lucy Whittingham is the mother of Laurence Addison. Here are her words.
About Laurence
About Laurence
46 years ago my son Laurence was born with a hole in the heart, cataracts in both eyes, and deafness, a result of Rubella, German Measles during pregnancy. Doctors said he would be a vegetable and that we should put him in an institution and forget him. I ignored that advice. At 18 months he also contracted meningitis.
Laurence went to Homai College who at that time had a wing for deafblind students. Laurence was a Monday – Friday boarder and his hostel staff were wonderful at teaching him such things as how to get dressed, and self-care skills, like putting clothes on. The height of his academic education was being able to count to 10 and write his name.
95% of what we learn comes through sight and hearing.
95% of what we learn comes through sight and hearing.
Deafblind people face unique problems in communication, accessing information and mobility, and require specialist support.
Pupils had to leave school at age 18 and coming up to that age we searched for somewhere suitable for Laurence to live, and watched the families of other deafblind school-leavers face the same dilemma, taking the best of the unsuitable choices.
There were no suitable long-term residential options for this group of people, and families had little or no input into decisions affecting their still very dependent adult offspring.
We were concerned that our youngsters were regressing, losing hard-won skills and their previous levels of independence.
28 years ago, with a group of other parents of young adults with multiple disabilities, we formed the Quality of Life Trust to promote the welfare and quality of life of this group and to provide them with life-long community residential care.
Once our Trust was incorporated we wrote a lot of policies and procedures and manuals – we planned out how the staffing rosters needed to work, and all of the myriad of practical things to get things underway. The original staff job description we wrote is largely unchanged and still in use!
It begins with our Mission Statement.
It begins with our Mission Statement.
“To provide a life-long community house placement for a group of five Deaf-Blind young people, staffed with personnel who are trained in the specialised needs of this group, and who are able to support them to maximum independence, through considered intervention, in the home, workplace and wider community.”
About funding
About funding
We discovered that the Ministry of Health had funding for people who were deaf, people who were blind and people with intellectual disabilities, but not for people with the lot!
We argued that the needs of our group were far greater than each of these individually, to no avail.
In the end, at a meeting I learned that the person I was talking with was going to England for a conference, and I asked her to please go and visit a home for deafblind people run by the well-established and internationally-recognised SENSE organisation.
I gave her the contact details, wrote her a letter of introduction, and she had a light-bulb moment when she visited a SENSE home and finally understood the scope of the issue and that there was a need to provide sufficient funding to do something like that in New Zealand.
With funding approved, we got a mortgage, bought a house, furnished it, bought a van, recruited our first staff and then in January 1995 our residents moved in. To say we learnt a lot along the way is an understatement!
Laurence lives there with 4 other people who are congenitally deafblind as well as being intellectually impaired, all now in their forties and fifties. We employ a House Manager plus full-time and part-time trained caregiver staff.
Residents are very dependent on our caregivers to assist where necessary, encourage constantly and ensure their safety. The caregivers are the eyes and ears of residents, and help them to interact in their community.
This home is the only one in New Zealand providing residential care to people who are deafblind from birth. It allows them to live with dignity in the community, as independently as they are able, to be fulfilled and challenged to have as “normal” a life as possible. It provides security and stability for the residents and peace of mind for families. It is their home-for-life.
We are a small group, below the radar, and with significant challenges. We are funded through a service agreement with the Ministry of Health, but that only covers the basics.
Our Trust Deed stated our willingness from the outset to be an umbrella Trust that other groups of parents could also use to set up their own home, but in spite of a few efforts in that direction, we have never found a group of parents willing to do what we have done. It is a long-term commitment – I have written 25 Annual Reports as Chairperson!
My main message to you:
My main message to you:
Laurence has never said “Mummy”, hugged me back, or looked into my eyes, let alone made me a cup of tea, picked me flowers from the garden or drawn me a picture. He has, however, taught me to be thankful for things that others take for granted.
Rubella is avoidable and preventable.
Rubella is avoidable and preventable.
It is included in the MMR vaccine. The current measles outbreak is testimony to the many people who have not been immunized. Anxiety about measles pales into insignificance in my head, compared to the risk of another Rubella outbreak, and the lifelong heartbreak of more babies being born like Laurence.
We would love your support.
We would love your support.
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