Breaking Barriers: Advocacy to navigate Health, Education & Social services

25/03/2023

15/03/2023

I recently read Parenting with Intention by Bridgett Miller.

It served as a great reminder of the importance of acknowledging the feelings associated with navigating services.

It is especially important for our families and young people with disabilities, and those in the child protection system, who are so often left suffering with anxiety and PTSD.

So many professionals ask "what's the matter" without considering how it feels.
We need to connect with our feelings, to wonder aloud, "how does that make you feel", ""Where do you feel that feeling"?

For example, whenever my child achieves something, before telling her that I am proud of her, I always ask how that felt in her body. She often tells me it felt fizzy and exciting in her arms (she's a stimmy autistic flapper).

This is an enjoyable feeling for her, and by identifying it and drawing it to her attention, it helps to build intrinsic motivation. She is much more likely to repeat that action than she would be if she were merely aiming to please someone else, or aiming to move up on the 🤬class behaviour chart🤬 (especially when these extrinsic behaviour systems are not used consistently !!!!!SIGH!!!!!)

12/03/2023

How many times has your neurodivergent child missed out on play time to "finish off work" or as a means of punishment for poor concentration?

There is an amazing movement spreading across America currently, and it was sparked by one of my favourite books, Wrong Turns, Right Moves in Education (Archway, 2019).

Aiming to bridge the gap between academics and the social , emotional and healthy well-being of children, the Liink project sees schools adopt four 15 minute outdoor, unstructured breaks in addition to lunch, for every child up to the age of 8.

The results in pilot areas have been staggering with clear results showing increased cognitive ability and lower off task behaviours during class time, as well as increased positive interactions and emotions observed across the age groups.

In the UK, the government acknowledges the importance of play in the EYFS stating "Play is essential for children's development, building their confidence as they learn to explore, relate to others, set their own goals and solve problems".

The Liink project has made it clear that time to play is vital for children at least up to the age of 8, and there is plenty of evidence from Scandinavian countries where they employ the same 15 minutes play for every 45 minutes work schedule all the way through primary school.

Don't be afraid to advocate for your child's right to play!

11/03/2023

The fantastic Family Fund.

The new website is very user friendly with the ability to see when you're next able to apply, and a tab showing other grants available.

05/03/2023

Choosing the right school for your child is one of the hardest choices you will make. Issues such as size, transport, behaviour management strategies and the all important whether you already have an EHCP in place will all have a bearing. This leaflet will help to guide you through.

Credit: Autism Education Trust for Parents and Carers

05/03/2023

Local Authorities can request help from DfE to address deficits, however to do so councils will need to sign up to the "Safety Valve intervention Programme".

Council's already do all they can to delay assessments or avoid them all together. It is telling that currently 92% of all tribunals where the local authority have refused to assess, are overturned.

The "Safety Valve intervention Programme" is about to make this even worse by making funding to address deficits only available 'in return for the delivery of savings'. How will these savings be made you ask? Why by issuing fewer EHCPs, reducing provision and ultimately failing to provide the support that our children deserve.

It has never been more important to educate yourselves. Make use of advocacy services. At BB Advocacy, we understand how tiring it is to have to fight for what you know your children need. We're here for you.

03/03/2023

The carrot and stick approach, also known as the reward and punishment approach, involves offering rewards or punishments to encourage or discourage certain behaviors. While this approach may seem effective in the short term, it can have negative consequences in the long term.

Firstly, the carrot and stick approach can undermine intrinsic motivation, which is the desire to engage in an activity for its own sake rather than for external rewards. When children are given rewards for every good behavior, they may start to believe that the behavior is only worthwhile if there is a reward. Similarly, when punishments are used as a deterrent, children may start to behave only out of fear of punishment rather than an understanding of why the behavior is right or wrong.

Secondly, the carrot and stick approach can create an environment of competition rather than cooperation. When children are rewarded for individual achievements, they may become less inclined to collaborate or help others, as this behavior would not bring them any personal benefits.

Lastly, the carrot and stick approach may not address the underlying reasons for a child's behaviour. We now understand that often challenging behaviours come from the autonomic nervous system. Relational safety is the new foundation, not behavioral compliance. Trauma- informed practice recognises the centrality of relationships. For instance, if a child is acting out due to trauma or anxiety, punishments may only exacerbate the behavior and fail to address the root cause of the problem.

In summary, while the carrot and stick approach may appear effective in the short term, it can have negative consequences on children's motivation, cooperation, and understanding of right and wrong. Instead, many experts now recommend more nuanced approaches that prioritise relationship-building, empathy, and understanding the root causes of behaviour.

BB

03/03/2023

FRIDAY FACT!!

⭐ The criteria to meet in order to have the LA assess for an EHCP is much easier to achieve than many parents realise! ⭐

⭐ This test is set out in the law (section 36(8) of the Children and Families Act 2014). This means these are the only questions the LA should be asking when considering whether or not to carry out an EHC needs assessment.

⭐ The SEN and Disability Code of Practice states that “the local authority should consider whether there is evidence that despite the early years provider, school or post-16 institution having taken relevant and purposeful action to identify, assess and meet the special educational needs of the child or young person, the child or young person has not made expected progress”.

❌ You DO NOT have to ❌

❌ Wait for the SENCO or Head Teacher to apply.
❌ Have the support of the school.
❌ Prove that the school are already spending £6000 on your child.
❌ Wait for 'x' number of terms while your child "settles in".

⭐ The Local Authority or school may try to tell you what THEIR policy is... But the legal threshold trumps policy every single time!!! ⭐

03/03/2023

Let’s kick this page off with something practical and something that could make a big difference in your life. Getting those finances sorted!

Claiming Disability Living Allowance (DLA) in England: What You Need to Know

Disability Living Allowance (DLA) is a benefit provided by the UK government to help people with disabilities or long-term health conditions with the extra costs they may face as a result of their condition. In this blog post, we'll provide an overview of DLA, including the different rates and categories of awards, age ranges, and how to request an application.

What is Disability Living Allowance (DLA)?

DLA is a tax-free benefit for children who have a physical or mental disability, a life limiting illniss, or a long-term health condition that affects their ability to carry out everyday activities. It is not means-tested, which means that it is not based on your income or savings.

At 16, DLA is replaced by Personal Independence Payment (PIP) and requires a new assessment in order to ascertain if a claimant will meet the relevant criteria.

What are the different rates and categories of awards?

DLA is divided into two components: the care component and the mobility component. Each component has different rates, depending on the level of support needed.

The care component has three rates (as of 2023/24): the lowest rate is £26.90 per week, the middle rate is £68.10 per week, and the highest rate is £101.75 per week. The care component is awarded based on the level of supervision or help needed with personal care, such as washing, dressing, and eating.

The mobility component has 2 rates: the lowest rate is (2023/24) £26.90 per week, and the high rate is £71.00 per week. The mobility component is awarded based on the level of help needed with getting around, such as using a wheelchair or a walking aid, or simply needing a higher rate of supervision due to for example lack of danger awareness around roads.

It is possible to be awarded either the care component or the mobility component, or both. The rate awarded will depend on the level of support needed and the impact on daily life.

What are the age ranges for claiming DLA?

DLA can be claimed by people of all ages, from children to adults depending on the area in which they reside within the UK. I will however focus on England and Wales as this is the system most familiar to myself.

How do I request an application for DLA?

To request an application for DLA, you can contact the Department for Work and Pensions (DWP) by phone, post, or online. The contact details are as follows:

Phone: 0800 121 4600 (textphone: 0800 121 4523)
Post: Disability Living Allowance Unit, Warbreck House, Warbreck Hill, Blackpool FY2 0YE
Online: You can download the DLA form from the GOV.UK website.

I’m going to be suggesting some top tips here…

*ALWAYS APPLY BY TELEPHONE IN THE FIRST INSTANCE*

By applying via telephone, your application will be stamped with the date of the call and any award will be backdated to that date. This can be worth hundreds of pounds as the form itself is incredibly lengthy and then the wait on a caseworker to assess and award a rate can take management months. Do pay attention to the date printed on the covering letter detailing when you need to get the form back to them by. Failing to do this will render the date of request backdating void.

*FILL IN THE FORM AS AND WHEN YOU CAN*

It can be relentless and depressing, but be honest and done be afraid to draw their attention to any supporting evidence you have, eg. Please see CAMHS report detailing the high level of supervision required at all times.
Don’t forget the assessor is not a medical professional, you will need to spell out what it is about the condition, illness, behaviour etc that creates the extra care needs.
Don’t be afraid to ask a friend, advocacy service or professional for help. I have filled in many DLA forms for families whilst employed by the NHS and LA. Please only pay for help if you really have exhausted all avenues… there are many advocacy groups offering to support your DLA applications in return for your hard earned cash!

Once you have received the application form and filled it in, you must ensure you are providing supporting evidence, such as medical records, to demonstrate the impact on your/your child’s daily life. The DWP will then review your application and let you know if you have been awarded DLA and at what rate.

*PLEASE PHOTOCOPY THE FORM AND ANY EVIDENCE BEFORE POSTING* Post does get lost, people do have to start all over again, and even if all is well this times, you may receive a short award meaning you will likely have to rewrite almost the same information again. This is infinitely easier when you have your old copy sat next to you. Post recorded delivery and keep proof of receipt, so if the form does go missing, you can insist that they keep to the original back award date given when you requested that form!

Do not panic if you don’t feel like you have enough evidence, the DWP with your consent, can approach the professionals you have named in the form for more information.

Don’t be afraid to challenge a decision. Many applications are turned down at the first hurdle. You simply request a statement of reasons to be posted to you and let them know that you indented to ask for a mandatory reconsideration. Many times they will clarify with you over the phone why you believe their decision is flawed and can change that decision. They may opt not to, or perhaps you yourself will work better methodically reading through and responding to each point on paper.

DLA is a gateway benefit in that once you are in receipt it can trigger other benefits… that’ll be a topic for another post.

Do feel free to ask questions!

03/03/2023

Feeling positive this morning and so motivated by the idea that I can use my experiences to help others to avoid the pitfalls I've had to overcome!!

03/03/2023

When supporting parents and young people with challenging executive functioning skills, the following is my go to checklist.

Often people will know what they are struggling with, but they may not have articulated it to themselves yet, and they may be sensitive to discussing something that they may feel is a failing on their part.
Tread gently with each other, and with ourselves.

Break tasks into smaller steps: Large tasks can be overwhelming, so breaking them down into smaller steps can make them more manageable. Use simple bullet points if text is overwhelming.

Use visual aids: Visual aids like to-do lists, calendars, and reminders can help an adult with poor executive functioning stay organised and on track. Keep it simple or make it pretty, what ever you need to do to make the resource work!

Create routines: Establishing a routine can help an adult with poor executive functioning develop better time-management skills and increase their productivity.

Prioritise tasks: Encourage the adult to prioritise their tasks based on urgency and importance. This can help them focus on what is most important and avoid feeling overwhelmed.

Eliminate distractions: Reducing distractions such as noise, clutter, and interruptions can help an adult with poor executive functioning stay focused and on task. Similarly, those who seek out certain sensory input may work better to music or need to sprawl out on the floor to work effectively.

Use technology: There are many apps and tools available that can help an adult with poor executive functioning manage their time, stay organised, and remember important tasks.

Get regular exercise: Exercise can help improve cognitive function, reduce stress, and increase energy levels, all of which can be beneficial for an adult with poor executive functioning.

Set realistic goals: Encourage the adult to set realistic goals that are achievable and measurable. This can help them stay motivated and focused on their priorities.

Seek support: If an adult is struggling with poor executive functioning, they may benefit from seeking support from a therapist, coach, or support group.

Practice self-compassion: It's important to remember that poor executive functioning is not a personal failing but rather a cognitive difference. Encouraging an adult to practice self-compassion and focus on their strengths can help them build confidence and resilience.

03/03/2023

Let’s talk a little bit about Executive Functioning for a moment. You may have seen the term on your child’s Ed Psych report, but have you ever wondered what those same struggles might look like for you?

It is well known that parents of neurodivergent children are more likely to be neurodivergent themselves. At the grand age of 40, I am only now learning to show myself the same grace that I do my children when those executive functions just aren’t… well… functioning!

Executive functioning difficulties can make it challenging for neurodivergent parents to access the services they need for their children. Executive functions are cognitive processes that help individuals to plan, prioritise, organise, and complete tasks. These skills are essential for navigating complex systems such as healthcare, education, and social care, and can be particularly challenging for individuals with neurodivergent conditions.

For example, a parent with ADHD may struggle with organising and prioritising the various tasks required to access services for their child. They may struggle to remember appointments or to fill out forms in a timely manner. Similarly, an autistic parent may struggle with understanding the unwritten social norms and expectations of these systems, which can lead to misunderstandings and miscommunications.

Unfortunately, many professionals may not be aware of executive function difficulties and may not take them into consideration when working with neurodivergent individuals and their families. This lack of awareness can make it even more difficult for parents to access the services they need.

It's important for professionals to recognise that executive function difficulties are a common issue faced by neurodivergent individuals and their families, and to work to overcome these barriers. This could include providing additional support and accommodations, such as written instructions or reminders, to help individuals navigate complex systems and access the services they need. By doing so, professionals can ensure that all individuals, regardless of their neurodivergent status, can access the services they need and receive the support they deserve.