As a parent or carer of a child with SEND, you may often need to take the lead in advocating to ensure your child’s needs are met. Yet, advocacy is not always easy. For some, it can be hard at times.
This part first acknowledges the difficulties some parents face. Then we offer suggestions for common challenges you may encounter.
A Difficult Journey
Frequently, our charity hears the difficulties of parents at various stages of their journey. They are unlikely to be alone, with more than 1.6 million pupils in England having SEN, an increase of 101,00 from last year and continuing a growing trend. Certainly, many of these children are getting the support they need. However, it’s important to recognise that a child’s SEND journey can be difficult for parents, too. Like their children, these parents deserve to be understood and their experiences seen and heard.
The truth is that parenting a child with SEND can be an unplanned heavy responsibility. In addition to schooling, home life and family relationships can be impacted. Importantly, parents cope as best they can for their children at home, but can struggle to get them support in school. Indeed, The Children’s Commissioner has expressed her concerns about a lack of support for children with Special Educational Needs in mainstream education and long waiting times for EHCPs as demand reaches new highs. Moreover, teachers report being in need of more resources, expertise and time to support their students.
Once initial support is accessed, resolving a child’s challenges is not always straightforward. Indeed, support may not be effective, and as children grow, their needs change. Moreover, parents may disagree with the school or local authority about whether their child meets the threshold for specialist services.
Similarly, school attendance can be an issue. Parents are legally responsible for ensuring their child’s regular school attendance. Yet, this is not always straightforward for a child with SEND. Their school may understand their absence for health reasons. However, a child may refuse to attend school due to mental health reasons. Understandably, this is a conflicting scenario for parents looking out for their child’s best interests.
Overall, the journey can be confusing and overwhelming. Acronyms, processes and the support system in general are not easy to understand. On top of this, many children with SEN are undiagnosed. It’s clear a child has additional needs, yet parents don’t know if there is an underlying reason. In contrast, a condition is suspected but the waiting lists for Child and Adolescent Mental Health Services (CAMHS) can be long. This can leave families with the difficulty of making sense of the vast amount of information available, without knowing how (or if) it applies to their child.
Ultimately, this means parents are left coping, waiting, researching, and hoping. Understandably, it can be hard to remain positive, not be overwhelmed, or feel alone and frustrated. Nevertheless, parents continue to be passionate about advocating for their children.
Assertiveness
Advocating can feel uncomfortable, especially if you are raising a concern. However, sometimes we all need to be assertive. Particularly if you disagree with a school’s decision, being passive could result in nothing changing. It is okay to speak up. Yet, being assertive requires us to be emotionally intelligent – to manage our emotions and understand the emotions of others.
Our Emotions
It’s okay to be emotional. We all have emotions, significantly when it comes to our children. This is normal and to be expected. To put it differently, we can’t control how we feel. However, we can control our actions. Indeed, it’s beneficial not to allow our emotions to dictate our actions.
Although how we feel is real, emotions can misrepresent the reality of the situation. Moreover, they can cause us to misunderstand the intentions of others. As a result, strong emotions can cloud our judgment and our advocacy can be affected.
You may not always agree with the school during your interactions. As such, it is useful to be self-aware and mindful of your emotions. For example, an email response may trigger you to feel defensive or aggressive. In this instance, you could take a moment to process the feeling before responding. Also, in meetings, it’s okay to ask to pause and take a breather. Truthfully, it’s okay to disagree. Yet, when we respond based on negative emotions, the outcome is rarely positive. In fact, it can be counterproductive and can leave us feeling regretful.
Another key point is the importance of being able to process how we feel. Certainly, personal attacks directed at staff are unacceptable and ineffective. However, calmly communicating our feelings in our interactions can be useful. Venting emotions to family members and friends is a good strategy.
Altogether, a good approach is to be calm and assertive. When we are calm, we have a better chance of communicating openly and effectively.
Remaining Open
Parents’ and schools’ perspectives and expectations can be different. Children at school are not children at home, and vice versa. For this reason, it’s important for you to fill the gap in the school’s understanding. Also, you want to understand what’s happening at school. To achieve this it’s beneficial to remain open and receptive to others’ questions and perspectives. Indeed, advocacy benefits from considering both sides of a story.
For some parents, talking about their child’s differences can leave them feeling that their parenting is being criticised. It’s not easy to hear your child does not conform at school and be asked questions about life at home. In addition, talking about our children feels personal. It can be easy for us to take things personally that perhaps were not meant personally. Understandably, we can feel defensive and close down. When this takes place, it’s tricky but wise to be mindful of our emotions.
Likewise, it can be useful to consider that staff may also feel defensive and vulnerable to criticism of their teaching. When possible, try to speak in general terms regarding school staff. For example, you may have more success criticising staff policy rather than assigning blame to an individual.
Remaining open helps you to be a helpful link between your child’s home and school life. It can enable you to better understand the school, improving your advocacy. Certainly, staying calm and being respectful can help build positive relationships.
Building Relationships
As your child’s advocate, the best approach is to build positive relationships with school staff. There may be several involved, for example, teachers, a special educational needs coordinator (SENCo), and other administrators. In addition, they may be coordinating with other professionals (e.g., Education Psychologists, GPs, and Speech and Language Therapists). It’s easiest to consider all these individuals as a team. More heads than one are likely to get the best outcomes for your child.
You are also part of the team. By engaging in conversation, you help them understand your child’s challenges and barriers to attending, accessing, and progressing in their school.
It’s true, you need the school’s support, but they need yours too. In fact, schools aim for ‘co-production’. Essentially, this means they’re aiming for you to be an active equal partner. Schools should inform you when they make special educational provision for your child. They should involve you at every stage and listen to your views, working with you to develop your child’s IEP/EHCP.
In the long run, the team will change as your child progresses through their education. Chiefly, when your child moves from school to further education. For instance, schools and colleges can work in partnership to assist your child’s transition. Again, it’s beneficial to build these new relationships and restructure the team.
Remember, you are talking with other adults who care about your child’s well-being. However, you may not always agree with each other, and that is okay. After all, as your child’s advocate, you need to represent their best interests.
Collaboration is the goal, but that doesn’t mean you can’t be assertive. Certainly, being assertive need not be opposing or cause conflict. Instead of making demands, it’s simpler to refer to law and policy and ask questions. Again, consider using questions that contain what/where/when/who/how. For example, “X policy states… How can this be resolved?… When can we expect this to take place?… Who is responsible for ensuring this takes place?”
Ultimately, advocacy should be empowering for you and your child. Undoubtedly, it can also be stressful and frustrating. At times, it can be difficult to see the school as a partner, not an adversary. It can help to focus on what is within your control (your actions) and what is outside of your control (most things). To be sure, your actions can influence outcomes, but they can’t control them. Offering solutions is a positive action you can take. Especially if you already know what works for your child outside of school.
Keep in mind that we are all human; no one is perfect. Managing our emotions is useful, yet not easy, and being assertive can be challenging. However, aim to build a partnership with the school to make your advocacy smoother and more effective. With this in mind, we can explore the challenge of communicating effectively.
Communicate Effectively
We communicate with other adults all the time. Yet few parents are well-practised in communicating with their child’s school about their difficulties. Perhaps, even more so when they want an action to take place. The fact is, good advocacy relies on effective communication. You want the message (thoughts, ideas, knowledge etc.) to be received clearly and understood by staff.
Communication is a two-way process. You are trying to understand the school’s perspectives and assisting them in understanding your child’s experience.
Firstly, you want to understand what has been said. If you don’t fully understand what the school is saying, ask further questions or seek clarification. There really is no such thing as a silly question. If the school is talking about procedures, policies or legislation it can also help to do your own research.
Now we will provide suggestions to help you get your message across. Try to:
- Know who you are communicating with, i.e. their job role and how they are involved with your child. It is useful to learn who the people are involved in the decision-making. In some circumstances, it makes more sense to tailor what you are saying to the right audience.
- Keep communications focussed. It helps to be prepared and have what you want to say in a logical order. If you are talking about several issues, begin with the areas that will make the biggest impact on your child’s experience. It can help to define any questions you have. Overall, try to have an aim of what you want to get out of the communication.
- Aim to keep your written communications as short as they can be, excluding anything that’s not necessary whilst remaining polite.
- Get everything in writing. Even phone conversations can be followed up with a confirmation email. Include in the email who you spoke with (if not the recipient), when, and what was agreed including any timeframes.
- Keep a record of your communications, including meetings. Recording who you communicated with, what was discussed and what time and date, can be useful for reference.
- Follow up as well as inform them of any other concerns or issues you become aware of. Schools should provide regular updates, but you can request one.
If You Are Unsatisfied
Keep in mind that additional support and adjustments in school are aimed at giving your child the same access to opportunities as their peers. Realistically, solutions to your child’s needs may not always be perfect. Certainly, you have the right to be unsatisfied with the support made available, the support given, or its outcomes.
When you are unsatisfied, first aim to resolve the issue by engaging with the school and working together. Be clear about what your complaint is and how you would like it resolved. If this is unsuccessful, consider the following steps. In general, they will want to see you’ve attempted to engage with the right people as you escalate your complaint.
In most cases, it is worthwhile contacting your local Special Educational Needs and Disability Information Advice and Support Service (SENDIASS). This is a free, confidential and neutral service.
Schools –
- Informal
- Talk with your child’s teacher or SENCo.
- Talk with their headteacher.
- Formal
- Ask for and follow the school’s complaint procedure. This will usually finish in a complaint to the school’s governing body.
- Other avenues to consider
- The Department for Education. See their guidance for complaints regarding SEN.
Local authority (LA) –
- Informal
- Talk with the council’s SEND Team
- Formal
- Follow the council’s complaint procedure.
- Dispute resolution service. This is voluntary (you don’t have to participate) and made available under the Special Educational Needs and Disability Act Code of Practice- 0-25 years. Essentially, a trained mediator who is independent of the council aims to help both parties agree on a way forward.
- In certain situations, you can make an appeal or claim using the court system. Find out more about the First-Tier Special Educational Needs and Disability Tribunal.
- Another avenue to consider (depending on your complaint) includes the Local Government and Social Care Ombudsman. See their guidance for complaints regarding SEN.
The Waiting Game
Perhaps one of the most common challenges you could encounter is having to wait. Waiting can sound like an insignificant problem to parents whose children do not have SEND. However, childhood can’t wait, and children with SEND deserve support to progress academically. Unfortunately, waiting times can be very long indeed. This is despite there being legal timeframes for processes such as EHCP assessments.
Try to remember, you’re not alone. Many parents are on waiting lists for assessments and specialists throughout the country. Without a doubt, waiting list backlogs can feel beyond frustrating. Know that it isn’t a trivial issue, and ensure you are taking care of your wellbeing, too.
Take Care of Yourself
Parenting a child with SEND can be demanding. Advocating for them can be emotionally and mentally draining. Nevertheless, you must take care of yourself. Remember that you and your child’s well-being are interlinked. Considering your well-being is not being selfish or ignoring your priorities. On the contrary, taking care of yourself is good for both of you.
Joining a community of like-minded people can really help. We all need solidarity from other people who will listen, understand, and empathise. There are lots of other parents in similar positions to you. Seek them out. For example, the *SNAP (Special Needs Action Panel) Parent Carer Forum are a group of parent carers, at various stages of this same journey. They aim to empower their community, signposting (pointing you towards) useful information and resources. Find out more here.
As mentioned, advocacy as a concept should be empowering. However, in practice, it can feel the opposite. Indeed, it can be disempowering when decisions are made that you disagree with. Significantly, the SEND system is not without fault. Again, it’s worthwhile focussing on what is within your control. Namely, the actions you can take to influence decisions. For instance, joining groups like SNAP Parent Carer Forum enables you to participate in influencing and developing local services.
Finally, try to look at the situation positively and not focus only on the negatives. Keep in mind that your child may experience challenges in some areas, yet excel their peers in others. Equally, progress may feel slow, yet you may not know what is happening behind the scenes.