In the second of three blogs highlighting the experiences of children, young people and families with a learning disability or autism, Mary Busk looks at what has changed and what is being done to improve their quality of care, quality of health and quality of life:
As a mum of three children aged 18, 17 and 14, I first realised my middle son was different when he was about six months old.
He didn’t babble or socialise like babies do, but it took a very long time to get the answers as to why this was.
The experience was not very positive for me or my family and I wanted to learn how things could have been better. So I did a lot of reading and worked with local parents to try to make services and commissioning better so that families would have a better experience and get the right support for their child with disabilities from birth or a young age.
Through doing that I learned a lot about how the system works across education, health and care at provider and commissioner level. I also came to understand from my own and other families’ experiences the vital importance of early intervention and prevention and the key role allied health professionals, including therapists, play in the development of children with disabilities.
Despite all we hear about equality, I also came to realise as my son was growing up that there is still much to do to make disability equality a reality. My disabled son cannot understand when people are not kind, or refuse him things simply because he is disabled.
I had to challenge the negative things and make sure he got the right help and support, including from health services. I also had to go to tribunals and to the Local Government Ombudsman to get therapies for my son.
I firmly believe disability equality needs to be mainstreamed so that health, education, care and other professionals and employers understand disability better and children and young people like my son can enjoy the same rights as their non-disabled peers. It should not be down to families to constantly have to fight and make the case themselves: it’s a basic human right.
Building on the national progamme, called Aiming High for Disabled Children, I cofounded the National Network of Parent Carer Forums (NNPCF) in 2010 with parent carers from across each of the regions in England. I have represented the interests, views and opinions of London Parent Carer Forums in discussions with national partners, such as the Department for Education, Department of Health, NHS England and the voluntary sector, and in the London region for many years.
Through other national work, including on Transforming Care for Children and Young People, I have developed good relationships with many parent carers and other organisations.
Nationally we need to make the most of opportunities to ensure that understanding the needs of children and young people with disabilities and their families are embedded in all systems. National decisions do influence local decisions and thinking.
I was coming to the end of my time with the NNPCF when I saw the advertisement for the family carer adviser role at NHS England. I was excited to see NHSE show leadership by creating the job alongside learning disability and autism advisers. I am now working as a job share partner with Ted Goodman and the role involves working on a new comments and complaints project.
I bring direct experience of using different systems to access help and services across education, health and care for my disabled son. He has a severe learning disability, autism and challenging behaviour.
I have direct personal and positive knowledge to bring to the role about improving the experiences of people with a learning disability and their families in relation to the complaints system and changing how services respond to people’s concerns and complaints. I have done this in different ways: through working strategically in coproduction with services, such as to create pathways, and directly through different complaints processes which have led to positive outcomes for my son and for other families.
I am also a family carer adviser on the recently created Children and Young People’s Transforming Care Steering Group. It is really important that we make positive changes locally for children and young people with a learning disability, autism or both. It builds on the work I did as one of the parent advisers who developed the new Care Education and Treatment Review (CETR) policy.
Working with Ted, I want to make a difference for family carers by making sure family carers’ voices are heard and that we influence positive change for families in local areas. Through this new role, I want to evidence the value of embedding coproduction with family carers nationally, regionally and locally by working directly with groups and family carers.
- If you missed it, read David Gill’s earlier blog in this series.