Here is my proposal for a Commissioner for Disabled People.
- Cost of Living Crisis” for all of us: If this is the difficult starting point, then factor in the additional personal disability for an individual and then factor in the mere thoughtlessness and lack of understanding from the rest of us. That’s what disabled people have to deal with every day! So who needs a little bit of help and support?
- A Commissioner for the Armed Forces: In the recent King’s Speech, the Government announced an Armed Forces Commissioner Bill to establish an independent champion to improve service life for personnel and their families. A perfectly reasonable idea.
- If it’s good enough for the armed forces, then perhaps it’s good enough for disabled people.
- We need an independent champion to improve the life of disabled people and their families. The Public Services Ombudsman for Wales is currently the last port of call for disabled people; but this is an unwieldy process, adversarial, not user friendly, especially not for the disabled person, with one arm tied behind their back.
- Attrition: All too often disabled people may have right on their side, but they are worn down, by constant battles and a lack of resources and support to fall back on. They are left high and dry without the tools to defend themselves and the ability to bring everything together in the face of determined resistance, overwhelming resources and technical intransigence. The moral case is trumped by technicalities, whilst flying in the face of common sense, fairness and justice.
- A Commissioner for Disabled People (role and scope): would understand what disabled people are up against, they have the power, status and authority to take on large companies and public institutions (such as local councils), making them accountable and answerable in a way that the disabled individually cannot do. The role of such a Commissioner would include:
| Advocacy | Resources, tools and authority |
| Clarification and investigation | Publicity, pressure and lobbying |
| Support and empathy | Mediation and guidance |
| Advice and access | Precedents, progress and consistency |
- The UN Convention on the Rights of Persons With Disabilities (CRPD): Article 19: Living Independently and Being Included in the Community: It states: Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.
- A Commissioner For Disabled People: It’s the direct answer for Nathan’s concerns. MP’s and MS’s can ask questions but can be overwhelmed by volume. Ministers stay above the local battle and say they can’t intervene in personal cases, which we understand. Nathan is screaming from the rooftops about bad practices, but what happens next? He’s tried the Petition Committee route at the Senedd (twice); the complaint route; the appeal route. He can’t afford the legal route in cases he loses and ends up facing a costs bill…! We will go to the Social Services Ombudsman for Wales, more in hope than expectation, but it’s a hoop we feel bound to go through for the sake of completeness. But this is no way for Nathan to spend his remaining years.
- A Painful Lesson: We observe that under the Independent Living Fund (ILF) there was a tripartite system in play; the local council, the disabled recipient of social care and Direct payments and an independent advocate. As the UK wide Independent Living Fund (ILF) was brought to an end, so we lost the independent advocate who provided a useful backstop or mediatory role for disabled people. Why should all disabled people be forced to fight their own battles against large monolithic local councils with all the power, control and resources. It’s a “David V Goliath” battle with only one winner. But it means misery for countless disabled people and their families. The lesson seems to be “keep your head down and accept what you’re given or else!” This is taken to another level when, like Nathan, you are facing a life ending illness such as Friedreich’s Ataxia.
- Equality of Arms: Even if there were some equality of arms, disabled people are not wishing to pick fights with local authorities; they really want to focus on living their lives to the fullest, which all too often means a struggle just coping with their disabilities from day to day; something the rest of us do not have to contend with.
- Nathan’s “Informal Care Co-operative”: We are a small group mostly in North East Wales within the local Labour and Co-operative Parties, who have provided Nathan with extra support, advice and guidance wherever it was needed. But nevertheless, there is only so much we can do and we don’t have any power to confront the Direct Payments and adult social care systems we are currently dealing with. But we believe in this campaign and we fight for justice. We can also see that if Nathan has any victories, so the wider community of disabled people will also gain a benefit. Nathan and his informal care co-operative leading the way in this campaign. Do not forget most disabled people do not even have access to their own “informal care co-operative” to assist them, hence the “bigger picture” need for a Commissioner for Disabled People.
- Equality..? To remind us, disabled people have the same rights as everybody else, yet they are being forced to re-fight every battle again and again. Frankly on points of access and equality it is local businesses and public institutions which are falling short and breaking the law such as the Equality Act 2010.
- Are we over egging this issue? Consider Baroness Tami Grey-Thompson’s recent struggle to crawl off a train at King’s Cross Station, London in July as there was no member of train staff on hand to assist her. It’s still happening in 2024, without any remedies in sight. We don’t have to make up these stories.
- Do we need a Commissioner For Disabled People? Overwhelmingly yes. If we, through our under resourced police, are unwilling to enforce the existing equality legislation, then we must have a Commissioner who will defend disabled people. We are letting them down and they deserve better. Is there an alternative? Yes…
- Scotland reopens the Independent Living Fund (ILF): In April 2024 the Scottish government re-opened the ILF having closed it some years earlier, to avoid a “catastrophe for the disabled”. They had come to the conclusion that local councils couldn’t be relied upon to administer Direct payments in a fair and consistent manner, so as to do right by disabled people. Their ILF is specifically designed with the user recipient’s health and well-being in mind so that they can spend their DP’s on a very wide variety of leisure and educational activities which promote a more fulfilling and meaningful life, rather than merely “existing”.
Nathan Lee Davies
18-10-2024.
EXTRACT: Showing what the Scottish ILF can be used for:
What can the money be used for?
Money from the ILF Scotland Transition Fund can be used to help you participate in new activities. It might be things you’ve not been able to take part in previously.
We want to help you to:
- become more engaged and active in your community
- be more independent
- spend time with other people
- #TrySomethingNew!
Successful Fund applicants show us how they meet the outcomes listed above.
You can use the money for things like:
- art lessons 🎨
- music lessons 🎼
- a device or piece of technology 🖥️
- to join a class 👨🏫
- to join a club 🤼
- travel training 🚌
- training courses 👩🏫
- sport lessons ⛷️
- driving lessons (we do not normally fund vehicles or vehicle insurance) 🚗
- sports equipment 🏊
- photography/film equipment 📸
- musical instruments or music production equipment 🎻
- gym membership, including personal trainers (if not funded elsewhere) 🏋️
- developing independent skills 🛠️👌
