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Accessible health and social care remains a challenge for disabled people globally, despite legislative efforts. Inclusive systems can significantly improve their wellbeing but must address individual needs and ensure effective implementation. I discovered that it has to go beyond physical access to facilities to include other factors such as the availability of suitable services tailored to individual needs. However, concern was expressed that implementation and delivery of services did not always match what was promised.
Many disabled people I spoke with expressed concerns that systems were implemented often without their input and were not regularly reviewed to see if they were still fit for purpose. I did, however, find examples of good practice, together with guidance for successful design and implementation of health equity for disabled people.
Dr Clarissa Kripke, who specialises in caring for adults with developmental disabilities has had success with an approach to healthcare that is inclusive and supportive of the rights and needs of her patients, allowing them more choice and control.
She champions inclusive healthcare practices, that integrate medical and social supports, ensuring that disabled people receive comprehensive and coordinated care in a community setting. Doctor Kripke emphasised the importance of understanding and addressing the unique needs of each individual, advocating for direct input from patients and their families in healthcare decisions. The support extends beyond just looking at their medical needs and really centres on the patient by considering their quality of life too, as Dr Kripke said "it’s about helping people to participate fully in their lives, not just about curing disease”.
Speaking with Dr Kripke and understanding how she addressed the wellbeing needs of her patients highlighted the importance of truly listening, valuing and responding to the voices of disabled people. This is echoed by The King's Fund and Disability Rights UK study in 2022 on what partnership working between disabled people and health and care systems looks like, and how it could improve. The key message was “Disabled people's voices need to be valued and prioritised in the planning and delivery of health and care services.”
Reducing health inequalities is an NHS England priority and this offers a real opportunity for collaboration and an opportunity to learn from Dr Kripke to strengthen healthcare accessibility in the UK for disabled people to help support their wellbeing. Within a healthcare setting this requires health care providers who are knowledgeable about how to care for patients with disabilities; health care systems willing to change how and where they provide care; and investment into services and support.
Delivery failing to meet objectives in many health and social care settings was identified as negatively impacting wellbeing. However, during my research, I discovered two potential toolkits that could help address this problem.
The first was The Disability Inclusive Health Services toolkit which was designed to ensure access to health information and services to achieve best quality of life outcomes for disabled people. Fleur Smith, who was a key researcher involved in creating the toolkit and is a Senior Technical Advisor in disability and rehabilitation at the Nossal Institute for Global Health in Australia explained that the toolkit, although produced for the Western Pacific region, was designed to be flexible and adaptable in various setting and countries. It has had a far-reaching positive impact on wellbeing in a number of countries.
Fleur then introduced me to Darryl Barrett, technical lead for disability with the World Health Organisation (WHO). Darryl was involved in developing the Global Report on Health Equity for Persons with Disabilities, released in 2023. This report provided new evidence and analysis of issues related to health equity for persons with disabilities.
My meeting with Darryl reiterated the importance of ensuring disabled people are consulted and represented so that when decisions are made, they are more inclusive. The message of disabled people being at the heart of health and care service design came across loud and clear. Involving disabled people is not only a moral imperative but also a strategic approach to creating a more effective, efficient, and equitable healthcare system to ensure for positive wellbeing outcomes.
Darryl went on to share some information on the WHO’s ‘Health equity for persons with disabilities: a guide for action (Disability guide for action)’. This is practical guidance to enable ministries of health to implement the recommendations in the global report, and supports Member States to meet commitments on the highest attainable standard of health for all people. In the UK, implementation of the WHO’s guide at government level, alongside the Disability Inclusive Health Services toolkit within the NHS could have significant benefits.
‘"People treat disability like it’s a kind of strange and unnatural occurrence. But disabled or not, all our bodies shift and change and experience varying degrees of function and limitation. What many people don’t see is the bigger issue: discriminatory attitudes and society’s unwillingness to meet the needs of disabled people."
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