Strategies for Parent Carers: Battling for Support and Services

‘The simple act of caring is heroic’ Edward Albert

As a parent carer, the battle to ensure that my daughters’ need are being met can seem relentless. I am currently fighting on two fronts- 1. To get a co-ordinated support plan with the council 2. Taking the council to a tribunal to get my daughter a specialist provision place within a mainstream secondary school. In this blog, I will reflect on the impact this is having on me and my family and also consider some of the strategies that can help parent carers when they inevitably need to fight for their child’s rights.

Feeling the impact
As parent carers we are already over stretched. Or children have higher care needs than their peers, we may not be getting much sleep and we need to juggle this alongside our other commitments. For me this is working in teacher education, studying and caring for my younger daughter (house work also factors in there somewhere too). Battling for support and services we need adds extra strain. Here are the ways it has impacted on my family.

1. Mental Health
   Caring for a loved one takes a significant toll on both mental and physical health (See research by Carers Scotland). For many parent carers this is caused by or at least exacerbated by the fight for appropriate support in school. When our children are not sufficiently supported in their educational setting their own mental and emotional wellbeing is impacted and they bring this home, increasing pressure on their carers and siblings. Worrying about your child increases stress levels and having to constantly be ready for phone calls etc. means it is difficult to relax. This can impact on sleep as well which may already be affected by the caring role.
2. Time
   As already mentioned, the life of a parent carer is already a busy one. We are juggling appointments and the increased care needs of our children as well as all the usual challenges involved in parenting. Unfortunately, fighting for support is also extremely time consuming. My current battle to try to get my daughter a specialist school place has felt like a full-time job most weeks. As well as fielding phone calls with lawyers, the council and a myriad of professionals; I have spent a significant amount of time reading up on policy and legislation to try to better understand our rights. Even as a teacher and teacher educator who is familiar with policy and legislation, I have found this challenging and I know for other parents who do not work in the field of education, it is even more so.
3. Becoming a ‘warrior mum’
   The advice coming from other carers is often the same ‘Be ready to fight’ for your child’s rights. While this is obviously true, I don’t know any parent carer who has not had to work hard to advocate for their child, it does not mean that it is easy. I am not naturally a combative person, in-fact I would say I generally avoid conflict. This means finding the strength to be this ‘warrior mum’ who takes on all these fights really takes its toll. Before each phone call I have to psych myself up and be prepared with the points I want to raise. I almost need to step into another persona. This is exhausting. Parent carers often get categorised as ‘problem parents’ who are too ‘demanding’ by professionals (see https://www.independent.co.uk/voices/parent-blaming-send-senco-disability-b2341278.html). However, I don’t know any parents who want to take on these battles, they are forced into them when services and supports are failing their child. Parental blame creates more barriers to accessing support and further stigmatises and stresses families of children with ASN.
   

What strategies can help?

1, Do your Research

I know this is a given for parent carers who are usually incredibly well informed about their child and their needs. Going into a meeting feeling informed and armed with ideas and questions always helps me to feel more confident and can help the meetings to be more productive.

2. Be clear about what you hope to achieve

This is closely related to point 1. Sometimes meetings can feel more like a ‘catch-up’ with professionals, while this has its place, sometime action is required and it is important to be clear what you want to happen. This might mean being clear about the purpose of a meeting if you are requesting a meeting with a professional or sending an agenda item for a pre-existing meeting (parent carers are not always invited to do this but it will usually be welcomed if you email in advance). This means that professional should come prepared to talk about the issues you have highlighted. If you have several points you wish to raise, bring a written list with you so you do not forget any.

3. Be persistent but not aggressive

As I mention before, being confrontational is not my default position. While I have at times been angry and upset by comments or decision made by professionals, I do find that having to take a more aggressive stance draining and less productive. It is important however to be persistent, yet friendly and make it clear that you will not back down on certain important issues. If you feel that you are not being listened to, tell them politely that you do not feel that your points are being considered. If you feel your questions are not being answered, ask them again (and again and again in some cases). If you feel that a professional has not accurately reported your child’s needs, you don’t need to be argumentative but you do need to present their needs and evidence of these. Do not be fobbed off if it is an important issue for your child.

4. Being open to dialogue

Again, this relates closely to the last point. While I find it is really important to approach each meeting prepared and clear about what needs to be achieved, I am also aware of the barriers and challenges professionals are facing with resourcing. Therefore, it is important to be open to discussion and dialogue, as long as it is solution focussed. Through negotiation you might be able to come to a mutually acceptable solution. You still need to ensure that the final solution does work for you child and that the professionals follow through with the action (another exhausting element of being a parent carer is ensuring that the action plan is actually enacted and chasing up when it is not).

5. Finding a community

These pressures and challenges are not shared by all parents. While my friends are understanding and empathetic, I find it does really help to connect with other parent carers who are experiencing similar challenges. I am fortunate that we attend a ‘family group’ at our local community centre. Being able to share information and experiences with other parents has been invaluable. I have learned about service we can access and got valuable advice about how to approach different situations as well as receiving validation and emotional support. Additionally, a parent has set up a WhatsApp group for all parents in the within council who are pursuing a tribunal for a specialist school place. Again, this has been indispensable for sharing information and progress. It has also allowed us to coordinate action around talking to the press and garnering support from local elected members.

6. Be open about the challenges you are facing

One of the biggest challenges for me is the uncertainty around where my daughter will go to school and how I will manage to drop offs and pick-ups when my children will be at different schools. As the process is moving so slowly, I do not know when I will even know this to be able to work out logistics. My concern is that I will not be able to get to work and may have to leave or find another job that I can do from home. Luckily, I shared these concerns with my employer early and they were extremely understanding. They did not want to lose me and we are working together to find ways that I way be able to work from home temporarily while I work out the logistics.
Similarly, I have found it has been important to be open with friends and family about the challenges we are facing so when I can’t make social gatherings or do not respond quickly to emails or texts they are understanding that I may be facing other pressures.

I would be interested to know what other parent carers have learned on their journeys so far. What challenges have you faced when battling for support for your child? And what strategies have you found help you? Please reply in the comments.