The system is broken and so am I!

I don't just mean one system either; every system is broken. Education, health, and social care are all in a state of disrepair, and the concerning reality is that there appears to be no coherent or effective plan in place to address these critical issues. The lack of a comprehensive strategy to repair these systems is alarming, particularly when it is evident that the proposed solutions often neglect the needs of those who are most affected by these failures. Instead of focusing on meaningful reforms that could lead to substantial improvements in the quality of services provided, it seems that those in positions of power prioritize initiatives that primarily serve as money-saving exercises. This approach is fundamentally flawed and short sighted. The root of the problem is that it all comes down to money—nothing more than financial considerations.

This financial focus often leads to cuts in essential services, reduced funding for educational programs, and a general decline in the quality of care available to individuals who rely on these systems. In education, for example, schools are frequently underfunded, resulting in overcrowded classrooms, outdated materials, and a lack of support for both teachers and students. The consequences are dire: students are not receiving the quality education they deserve, which can have long-lasting effects on their future opportunities and overall well-being. Similarly, the health care system is plagued by inefficiencies and inequities that stem from a relentless pursuit of cost-cutting measures. Instead of investing in preventive care and comprehensive treatment options, many health care organizations find themselves in a cycle of budget constraints that ultimately compromise patient care. This leads to longer wait times, inadequate staffing, and a general decline in the quality of health services available to the population. In social care, the situation is equally troubling. The focus on reducing expenditures has resulted in a lack of necessary resources for vulnerable populations, including the elderly, disabled individuals, and those facing mental health challenges.

The absence of adequate support systems means that many individuals are left to navigate complex challenges without the assistance they desperately need. Overall, the prevailing mindset that prioritizes financial savings over the well-being of individuals and communities is not only problematic but also unsustainable.

A fundamental shift in perspective is required one that places the needs of people at the forefront of policy decisions. It is crucial to recognize that investing in education, health, and social care is not merely an expense but rather an investment in the future of society as a whole. Without such a shift, we risk perpetuating a cycle of neglect that will continue to harm those who are already the most vulnerable. The time has come for a serious re-evaluation of priorities, with a renewed commitment to creating systems that are not only functional but also just and equitable.

We have an amazing school for the boys that supports them with exactly what they need, providing a nurturing environment tailored to their individual requirements. This institution stands out due to its dedicated staff, specialized programs, and a strong emphasis on personal development, which collectively contribute to the boys' growth both academically and socially. However, despite the exceptional support and resources available at this school, we have faced significant challenges with the local authority (LA).

The situation with W is particularly complex. Although he is currently in a transition phase, we have recently received confirmation that he will be able to continue his education at this school, which is a relief. Nevertheless, this resolution did not come easily. For several months, we endured unnecessary stress and heartache due to the LA's insistence on exploring alternative schooling options. They claimed they were obligated to consult with other schools to determine if any could adequately meet W's unique needs.

The underlying issue stems from the fact that the school W currently attends is an independent institution, which, as we all know, comes with a significant financial burden. The LA's rationale for considering other, potentially cheaper schools was based on budgetary constraints and a desire to minimize expenses. This raised a troubling possibility: if a less expensive school had presented itself, one that might not have the same level of resources or specialized support, the LA could have easily decided to transfer W. This would have been particularly detrimental given that W struggles with transitions and change.

The thought of uprooting him from a school where he has established a sense of belonging and where his specific needs are being met is daunting. It is disheartening to think that the LA would prioritize financial considerations over the well-being and stability of a child who has already faced numerous challenges. The emotional toll of this uncertainty has been significant for our family, as we navigated the complexities of the educational system while advocating for W's best interests.

In summary, while we are grateful for the exceptional education and support W receives at his current school, the experience with the LA has been fraught with anxiety and concern. It highlights the ongoing struggle many families face when trying to secure appropriate educational placements for children with special needs, especially in a system that often seems more focused on budgetary limitations than on the individual needs of students.

When it comes to health care, we have had to fight tirelessly for every single appointment. Our journey began with W, who has faced numerous physical challenges since he was just 2 years old. It has been an uphill battle to secure the necessary support for him, and after years of persistent advocacy and navigating through a complex system, we finally, at the age of 11, have Rheumatology involved in his care. This milestone, however, did not come without significant effort and financial strain, as we resorted to paying for private consultations to expedite the process and obtain the expert opinions we desperately needed. The experience has been both exhausting and frustrating, highlighting the systemic issues within the healthcare system that often leave families like ours feeling powerless and overwhelmed.

Similarly, when it comes to H, we have encountered numerous obstacles in our quest to seek out mental health support for his anxiety. Despite our repeated efforts to access appropriate care, we have often been met with resistance. The prevailing argument from various healthcare professionals has been that because he attends a supportive specialist school and is autistic, he does not require additional mental health support. This stance persists even in the face of extensive documentation provided by the school, which clearly outlines his needs and the necessity for tailored mental health interventions. It is disheartening and infuriating to feel as though our pleas for help are being dismissed, as if the evidence we present is somehow invalid or insufficient.

We have fought for every single bit of support for both boys, facing not only bureaucratic hurdles but also a sense of adversity and blame that seems to accompany our requests. The restrictive criteria set forth by the NHS often feel like insurmountable barriers, leaving us to navigate a system that appears to prioritize policy over the genuine needs of children like W and H. One of the most troubling aspects of this situation is the pervasive notion that the boys’ autism somehow diminishes their entitlement to necessary mental health and physical support. It seems that the assumption is made that, because they are autistic, they are expected to inherently experience mental health difficulties and physical challenges, thereby justifying the denial of additional support. This perspective is not only unjust but also perpetuates a cycle of neglect and misunderstanding.

It is profoundly unfair that the system appears to operate under the belief that being autistic equates to a lack of need for support, as if we are simply expected to endure the challenges without the necessary resources. This raises critical questions about the level of discrimination that continues to persist within our health care system. How is it that such a biased viewpoint can remain unchallenged? How is it that the experiences and needs of autistic individuals and their families are overlooked, relegated to the side lines of policy and practice? It is essential to bring these issues to light, to advocate for change, and to ensure that all individuals, regardless of their neurodiversity, receive the comprehensive care and support they rightfully deserve.

When it comes to the complex and multifaceted issue of social care, I find myself compelled to address two significant tangents that are particularly pressing in my current situation. The first of these tangents pertains to the realm of children's social care, specifically focusing on children with disabilities. In our case, we have undertaken the initiative to secure funded independent social care assessments for my sons, who have specific needs that must be addressed. This decision was not made lightly; it stemmed from a frustrating and prolonged struggle to have our local social care services recognize and assess my children appropriately as individuals with disabilities. Instead, the social care system has repeatedly conducted safeguarding assessments, which, while important, have ultimately failed to acknowledge the unique needs that arise from their disabilities. The repeated safeguarding assessments have led to the unfortunate conclusion that my children have no additional needs, a perspective that is not only inaccurate but also dismissive of the challenges they face daily. This ongoing issue has now reached a critical point where the local social care authorities are refusing to accept the independent report we have submitted, which clearly outlines the specific needs of my children as identified by qualified professionals. Furthermore, they are denying any funding for the necessary support services that are crucial for their development and well-being. In their response, the authorities have claimed that they do not have a legal obligation to act on the findings of the independent assessments, which is partially correct. However, it is essential to highlight that while they may not be legally mandated to incorporate the social care provisions outlined in the independent report, they are still obligated under the law to support all identified needs of my children. This legal requirement is not merely a suggestion; it is a fundamental aspect of ensuring that children with disabilities receive the care and support they require to thrive. Currently, the local social care team is insisting that I must self-refer to them for support, despite the fact that the needs of my children have already been clearly identified in the independent assessment. This stance is not only frustrating but also fundamentally wrong and, in my view, unlawful. It places an undue burden on families like mine, who are already navigating the complexities of raising children with disabilities. It is imperative that social care authorities recognize their responsibilities and take appropriate action to address the needs of all children, particularly those with disabilities, rather than evading their obligations through bureaucratic loopholes. The system must evolve to provide the necessary support and resources, ensuring that every child has the opportunity to receive the care they rightfully deserve.

The second social care issue that I want to address is with Adult social care, which is a critical aspect of our community's welfare system. My brother is currently residing in a supported living arrangement designed to provide him with the care and assistance he requires. However, we have recently been informed that he does not qualify for 24/7 one-to-one care, which is a significant concern for our family. This situation has become increasingly complicated as my brother is presently in the hospital, where we have been told that the care company responsible for his support is not funded to provide assistance during his stay. This has raised numerous questions about the adequacy of his care and the assessments being made regarding his needs. To add to the complexity of the situation, there have been discussions surrounding my brother's capacity to make decisions for himself. Initially, the care team suggested that he possesses the capacity to make independent choices. However, I felt compelled to question this assertion, given my brother's unique circumstances. He was born with a brain injury known as Semilobar holoprosencephaly, a condition that significantly affects cognitive function and development. As a result, my brother, who will turn 41 this Saturday, has the cognitive abilities of a 7-year-old child. This disparity raises serious concerns about the appropriateness of labelling him as having full capacity. In response to my inquiries regarding his capacity, the care team quickly adjusted their stance, stating that my brother has no capacity in certain areas while exhibiting fluctuating capacity in others. While it is true that he can express preferences regarding simple choices, such as what he would like to eat or activities he enjoys, he is unable to make informed medical decisions or articulate his needs effectively. This inconsistency in their assessment of his capacity only adds to our frustration and confusion. Furthermore, it has come to my attention that social care has determined that my brother does not require additional support, despite the onset of his epilepsy and the complexities it introduces into his care needs. The assertion that there have been no changes in his requirements since his epilepsy diagnosis is not only misleading but also deeply concerning. It appears that these decisions are being made primarily for financial reasons, as they seem to prioritize cost savings over the well-being and safety of individuals like my brother who rely on social care services. The implications of such decisions can be detrimental, leading to inadequate care and support for those who are most vulnerable in our society. This situation underscores the urgent need for a re evaluation of how adult social care is administered, ensuring that the needs of individuals with disabilities are recognized and met with the appropriate level of support and compassion.

My husband and I both have neurodivergent (ND) profiles, which means that we navigate the world in ways that are often different from neurotypical individuals. This difference in our cognitive processing and emotional regulation requires us to seek and utilize support that is above average in comparison to what is typically available. Our days are filled with challenges that demand significant mental effort and energy, as we work to manage our unique needs while also addressing the complexities of everyday life.

However, the reality that we face is quite daunting. Much of our mental energy is consumed by the need to advocate for others in various situations, whether that be in social interactions, professional environments, or even within our own family dynamics. This constant battle to assert their needs and ensure they are understood can be incredibly draining. As a result, we often find ourselves with little to no energy left to seek out the support we require for our own well-being.

In light of this, my husband and I have developed a system of silent support for one another. We understand each other's struggles on a profound level, which allows us to provide comfort and assistance without the need for extensive verbal communication. This mutual understanding creates a safe space where we can express our feelings and frustrations, even if it is just through a knowing glance or a gentle touch. We strive to uplift each other as best as we can, offering encouragement and love amidst the challenges we face.

Despite the difficulties, we remain committed to saving whatever emotional and mental resources we can muster to support the other individuals in our lives who also require assistance. This often means prioritizing their needs over our own, which can lead to a cycle of self-neglect. Nevertheless, we find purpose in helping others, and it brings us joy to be there for family, friends, and community members who rely on us.

Ultimately, while we may have no balance between our own needs and the needs of those around us, our relationship is built on a foundation of empathy and understanding. We continue to navigate our lives together, seeking to create a supportive environment not only for ourselves but also for those who depend on us. Our journey is one of resilience, as we advocate for others while offering the support that others need, all while maintaining our commitment to each other.