Neurodiversity 101: How working together can change lives

25 years ago I set up an interdisciplinary centre with health and educational professionals under one roof because of my experience as a parent of going from one service to another telling my child's 'story'...

Services were in siloes, and support was too..

How could I do activities given from Occupational Therapy, Speech and Language Therapy, School work and more when I had three children, a job and a home to run... going to different clinics and seeing different professionals was also challenging too and hard when balancing home and work.... My child was one child yet I had many different versions of them being discussed by the different professionals. There were also lengthy reports to read and digest and understand that didn't talk to each other....

I was recently reading a review article in the Journal of Child Psychology and Psychiatry about Integrated Health Care Models and it made me review how much time parents ( and adults) can go from one service to another as neurodevelopmental diagnoses are often delivered in professional siloes.

Why do we do this when :

• There are shortage of professionals?
• There are long waiting lists?
• There is inequitable provision of services .... more for some conditions than others
• There is extensive evidence of co-occurrences across and between neurodivergent conditions and also mental health conditions
• There is a need to consider the differential diagnosis from one condition to another otherwise the wrong diagnosis can be made or not considered at all!
• This can result in duplicate provision and secondary impact and costs the family/adult a lot because of needing to go from service to service by not delivering a person-centered approach.

How can we unlock and deliver integrated models of practice?

A dive into collaboration and coordination

In the pursuit of comprehensive solutions, the challenges faced by children and young people (CYP) and their parents with overlapping physical, Neurodevelopmental conditions , and mental health conditions have sparked the exploration of innovative approaches.

Families often grapple with the complexities of gaining a timely diagnoses, accessing specialized care. This can result in unmet healthcare and educational support leading to further impact. The emergence of integrated solutions where health, education, and social care work together gives hope that parents don't have to march from place to place gaining bitty solutions which are not person or family centred.

The core of Integrated Care

At the heart of effective integrated support and care lies a key factor: understanding and definitions that underscore collaboration and coordination. It's a shift from isolated services to seeing the value of a collective effort.

This approach bridges gaps between various services where there are often budgetary arguments and end up there being siloes of commissioning and delivery.

The objective needs to be able to deliver efficient and holistic care for the person( and their family)(and child or adult ) whose well-being depends on a seamless blend of care. It should not be up to the parents or the adults to 'fight' the system to gain what they need...

Nurturing a collaborative ecosystem

I love the ICF framework.The International Classification of Functioning, Disability and Health (ICF) by the World Health Organization (WHO) is a framework that defines health and disability. It recognises that health involves the interaction between a person's body, their functional abilities, their environment, and their participation in society.

The ICF focuses on a person's ability to perform activities, participate in life situations, and addresses the impact of health conditions on their overall well-being. It moves beyond a purely medical perspective, acknowledging the broader context of a person's life and the interplay between health, functioning, and the environment in which they live. It is not a medical model defining people by narrow constraints but recognises that we change over time, and the environment we are in often changes too.

What do we know?

We already know that children with chronic physical illnesses face a 62% higher likelihood of developing mental health disorders compared to those without such conditions (Suryavanshi & Yang, 2016). We are not separate beings...

This sobering reality recognises the intricate dance between our physical and mental health and the tightrope we often are balancing to ensure we remain at our best. ADHD and and anxiety disorders can be part of this narrative and we see that 4% to 10% of CYP with chronic conditions also have these conditions as well. (Glassgow et al., 2020).

“No man is an island, entire of itself; every man is a piece of the continent, a part of the main.....― John Donne

If you live with one set of challenges it can lead to multifaceted challenges that transcend physical health, affecting all domains in your life. Understanding the needs to create pathways to intervention early to limit the secondary impact remains as important today as ever.

Bringing integrated care to life

"Alone we can do so little; together we can do so much." - Helen Keller

Integrated service models can offer a new way forward. By fostering collaboration between primary care, specialists and also including education in our solutions and planning we can start to consider ways of offering comprehensive support.

You may want to read about the Partnering for Change model from CanChild in Canada. This focused on Developmental Coordination Disorder( also known as Dyspraxia) but the concepts could be easily extended across and including other conditions too.

We need to create nurturing ecosystems of support.Having the same language and transparent processes also means people know where to go and what to expect at each stage of these processes.

A crucial facet of this approach has to be always gaining and understanding of the user experience including parents and young people.

Defining the future: A unified approach

The essence of integrated care lies in definitions that underscore collaboration and coordination. It's about a shift from isolation to unity, ensuring there is seamless and holistic care.The time is ripe to embrace this paradigm shift, paving the way for a future where every child or young person is equitably valued and can thrive and optimise the skills and talents they have.

Henry Ford's quote, "If everyone is moving forward together, then success takes care of itself"

This is a march we need to make together. At the moment it feels a little like each one of us is marching to a different tempo and who shouts the loudest ends up getting the most.

What are some of the economic arguments for this approach?

1. Reduced healthcare costs - reducing long term comorbidity and secondary impacts and optimising the professionals we have in place
2. Effectively utilising the most motivated resource we have.... parents
3. Better educational and employment outcomes
4. Enhanced productivity
5. Reduced health disparities
6. Efficient resource allocation
7. Lower administrative costs
8. Improved person/family satisfaction

Blog Author

I am Amanda Kirby, CEO of?Do-IT Solutions?a tech-for-good company that delivers consultancy and guidance, training and web-based screening tools that have helped 10s of 1000s of people. We strive to deliver person-centered solutions relating to neurodiversity and wellbeing.

I am a mixed bag of experiences and skills and have 25+ years of working in the field of neurodiversity. I am a medical doctor, Professor, and have a Ph.D. in the field of neurodiversity; parent and grandparent to neurodivergent wonderful kids and am neurodivergent myself.

Theo Smith and I wrote the UK award-winning book?Neurodiversity at Work?Drive Innovation, Performance, and Productivity with a Neurodiverse Workforce. My 10th book came out called?Neurodiversity and Education?in March 2023. Theo and I are writing a new book in 2024... watch out.

A BIG ASK...

We published the first Neurodiversity Index Report with City and Guilds Foundation in 2023 and now the survey is open again to get some really important benchmark data.

Please, please, please partake - we would love to see if the experience of neurodivergent employees in the workplace has changed or has training improved.

??This survey is for everyone - employers and individuals.

**You can claim a City and Guilds Digital Credential to share with your networks to help us strive for more inclusive and equitable workplaces.

*****Take the survey HERE: https://lnkd.in/eDntbACt

Read our report and campaign here for 2023: https://lnkd.in/ehedj_-H