Alison Miles – Parent/Carer Council Development Officer

My name is Alison and I have two children: Ellen who is 9 and Stewart, 12. Ellen was diagnosed at 18 months with congenital myasthenia, a rare neuromuscular condition nick-named ‘the ragdoll illness’. She uses a wheelchair, takes medication five times a day in order to function, but is not on the disability register, so does not qualify for social care services. Ellen receives ongoing physio and occupational therapies and has a statement of special educational needs linked to her physical disability. She is supported full-time at her local mainstream primary school.

I have a background in supported housing and I am particularly interested in person-centred planning, i.e. involving children, young people and their carers in the development, delivery and review of individual care and support packages. I am also committed to drawing together our experiences as parents and carers of children with disabilities or additional needs, to demand, inform and support continuous service improvement.

Gün Akyuz – Chair (and Founder Member/Chair of Down’s South London)

My name is Gün and I have two children, a 16-year-old daughter and a 12-year-old son. My son has Down’s Syndrome. His condition was diagnosed post-natally. He was also a premature baby (born at 30 weeks). He has learning difficulties associated with his condition, but has an additional speech and language disorder, which requires regular therapy; he was also diagnosed with sensory processing dysfunction requiring sensory integration/occupational therapy input. He has a statement of special educational needs. He transferred to a special secondary school last autumn, following a mainstream nursery and primary school career, where he received full-time learning support assistance, plus additional therapies, sometimes intermittently.

When my son was very young I helped to set up a support group for parents and their children with Down’s Syndrome. At the time we found it hard to secure adequate speech and language therapy provision, something that our group of parents considered fundamental to their development, not least their prospects for more successful mainstream school inclusion. That group has now grown into a charity, Down’s South London, which I continue to help run on a voluntary basis. It provides free, regular specialist early intervention speech and language therapy for children from South London (which it has won a national award for).

I have always taken a keen interest in the welfare of children with disabilities and became involved with the Parent/Carer Council at the outset. I have also attended Community Action Southwark (formerly Southwark Community Care Forum) Disability Network meetings for many years and in my PCC role also contributed to the SEN Funding sub-committee panel established to create guidelines and a framework for implementing and monitoring the introduction of Southwark’s revised SEN funding of mainstream schools in 2007/08. In my other life, I work as a journalist and media researcher (pays my bills).

Tracy Julian – Treasurer

My name is Tracy. I have two children, a girl of 15 who has no additional needs and a boy of 10 years who has Cerebral Palsy and global communicational delay. I became aware that my son would have physical problems shortly after he was born, as he suffered a bleed on the brain when he was six days old. I didn’t know how much his communication would be affected at the time, but as he got older it become more apparent that he would have issues with his speech and understanding.

My son’s life is affected on a daily basis as he has limited mobility. He requires the use of a wheelchair and can only walk with assistance, never unaided. He is incontinent and uses pads and, although I am trying to get him to use the toilet permanently, this can be very difficult, for example: if we need to go shopping or if I am travelling far, or he is in the care of another adult because he hasn’t learnt to ask others for the toilet.

My son is registered disabled and is therefore on the Social Services register but as yet, I have not received any assistance from them. He does, however, receive excellent care from the health department.

I joined the Parent/Carer Council three years ago because I feel strongly about many of the issues which are affecting the families in Southwark, such as housing, financial needs of families with disabled children and making sports and leisure facilities much more accessible, especially for children who are confined to a wheelchair.

I have also been a member of Contact a Family Steering Committee for the past six years.

John Kahn – PCC Member

Hi, my name is John and I’m married with one child, who is six years old. She was diagnosed with Autism when she was three. We managed to obtain a ‘Statement of Needs’ for her to attend the local primary school where she had one-to-one care, but despite the best efforts of the school it was obviously the wrong environment for her and she was transferred to a special school when she was five.

I have been a member of the PCC since it was set up three years ago. I was prompted to join because, following my daughter’s diagnosis, I was frustrated at the lack of help/facilities/advice available for disabled children and their families.

Zareena Hussain – PCC Member

Hello, my name is Zareena and I have two children aged 10 and 13. My eldest was diagnosed at nine years with Asperger’s Syndrome. Certain aspects of his condition can affect him and others around him on a daily basis, depending on where he is, who he is with and what he is doing. He does have a statement, but has had a very negative experience of education to date. We live in hope that one day life will be better for him.

I joined the Parent/Carer Council when it was set up three years ago and have participated in many consultations and attended many conferences in reference to our children. For me, the Funding for Inclusion consultation that took place in November/December 2006 was one of the most important and extensive consultations to take place in Southwark, affecting a large number of children with statements at bands five, six and seven. I recently attended a training day on the ‘All of Us’ Framework for Inclusive Play Practice, which is based on the model of inclusion adopted by the Southwark Play Network last year.

I think being involved helps keep me informed, which not only benefits me and my child, but other parents and carers of children with disabilities or additional needs in the same boat. I am currently doing a part-time course for parents of children with disabilities, which focuses on diversity and inclusion, and hope one day to work with children with special needs, possibly as a SENCo, building on past experience as a learning assistant.

Jennifer Stephenson – PCC Member

I am Jennifer, and I have five children: step-son, Akeem (aged 17), step-daughter, Kadeem (aged 14), Lauren (13), Leonie (five) and Leah (three). Lauren has Angelman Syndrome which simply means she has a chromosome missing which affects her development. Lauren was diagnosed when she was three after having a febrile convulsion which is a fit. She also has epilepsy. Lauren attends a special needs secondary school in Lewisham, which she thoroughly enjoys.

I have been involved with the PCC since October 2008 when I stepped down as Chair of Contact a Family Southwark, a position I’d held for eight years. I work full-time and am a Governor at Haymerle Special Needs School in Southwark.

The only service I receive at present is four hours ‘respite care’ per week so I can do my food shopping. Lauren hates shopping and throws herself on the floor when she has had enough. I am particularly interested in developing and improving short break and respite care services for parents and carers and their children.

Heather Tarbuck – Vice-Chair

Hello, my name is Heather, I have three children aged 11, nine, and seven. My middle daughter Lola has global delay and both fine and gross motor difficulties, she also has growth hormone and deficiency. I am a School Governor at a hospital school in Southwark and have a background in Social Work and local government.

My particular interests and concerns relate to the education and the attainment of children with additional needs who are placed in mainstream school. I have recently joined Southwark’s Aiming High Project Board, which is overseeing the funding, and development of additional services for children with disabilities.

Mary Agu-McShera – PCC Member

Hi, my name is Mary. I have five children, aged four, five, seven, eight and 20. My eight-year-old son has Autism and receives one-to-one support at school. I am particularly interested in education, school transfer, transition and independence training. I would like more opportunities for isolated families to come together, share experiences and support each other.

James Andrews – PCC Member

I am James and dad to four children: a 10-year-old boy, 11-year-old twins (a girl and boy) and a 13-year-old girl with muscular dystrophy and chromosomal abnormalities. My daughter attends a special needs school in Southwark and uses a wheelchair when she gets tired. I am particularly interested in short breaks and would like to know more about the range and types of support available for families on low income.

Antoinette Harris – PCC Member

I am Antoinette and a mother of three children; two boys aged 13 and three-and-a-half, and a girl, aged eight. My daughter has Spina Bifida, Hydrocephalus (arrested) and a chiari malformation. She is a wheelchair user, but does not let that stop her. I work full-time supporting children and their families and have been working in that field for many years. I am especially interested in integrated play-schemes and after-school clubs.

Agnes Ingleton – PCC Member

My name is Agnes. I have two sons, aged eight and ten. My older son has Autism and learning difficulties and attends a special school in Southwark. I get a fair amount of support from Social Services, and am in receipt of direct payments, which gives me greater control over the care my son receives. I am committed to improving the quality of care provided by contract carers commissioned by statutory services.

Lendell Morrison – PCC Member

Hi, I am Lendell and I have three children, one with Down’s Syndrome. I joined Southwark Parent/Carers’ Council because I am committed to helping other parents/carers of children with disabilities who don't have a voice. I am also a member of Down’s South London, a south London-based charity for parents of children with Down’s Syndrome, and helps us out by taking notes of the Southwark PCC’s meetings.

Dorah Naisubi – PCC Member

My name is Dorah and I have three sons aged 26, 13 and seven. My 13-year-old son suffered encephalitis and movement disorder at the age of two and was subsequently diagnosed with Global Developmental Delay, an Autistic Spectrum Condition, and later catatonia, which means that his body freezes occasionally and without warning. He has fluctuating complex needs which affect his speech, mobility and behaviour. He attends a ‘special needs’ school in Southwark. I am particularly concerned about my son’s ability to cope on a day-to-day basis and how best to protect him from harm when at school or away from home.

Carol Nwosu – PCC Member

Hi, my name is Carol. I am also the Chief Executive of the Sickle Cell and Young Stroke Survivors charity based here in Southwark. I have three children, one aged 12 who has sickle cell anaemia and has survived several strokes. I have returned to the PCC after a two year break and am particularly interested in promoting sickle cell awareness in the community.

Marika Thorogood – PCC Member

I’m Marika and mother to Felix, who has Galactosaemia and further undiagnosed neurological complications. This means he has physical and learning disabilities and little speech. He enjoys using Makaton to communicate and and hopes to get an Assisted Communication Device soon, although this is proving difficult. Felix has made a lot of progress physically and wants to join in lots of kids’ activities, like music, singing, drama, swimming, sport, arts and crafts and going to playgrounds. I’d really like to see more specialised and inclusive play and leisure activities for Felix and other children with special needs and disabilities, as it is difficult to find appropriate, fun activities for him. This is why I volunteered to participate on the Aiming High Project Board, as the Aiming High for Disabled Children programme has been set up to increase access to short breaks and positive activities for disabled children and their families. Anyone interested in this area is welcome to contact me using the info@southwarkpcc.org.uk address, or alternatively speak to me via the e-forum.

Elizabeth Trescher – PCC Member

My name is Elizabeth and I have two children; a girl aged 15 and a boy, eight. My son, Talon, has Asperger’s, is statemented and attends a mainstream school in Southwark. I am a member of the Southwark Branch of the National Autistic Society and regularly attend a parent support group at Spa School. I am particularly interested in: disability awareness raising in mainstream schools, stamping out discrimination, tailoring health and education for individuals with disabilities, increased transparency and clarity for carers and those with disabilities regarding benefits, statementing and transport, developing social clubs for children with disabilities, including sports, and holidays tailored for children and families with disabilities.