Being a Parent…..and an Advocate

Advocacy comes in different forms but put simply is about enabling and supporting people to express their views and concerns, giving them guidance and helping them to explore their choices. It’s helping people who are unable themselves to secure their rights and the services they need and are entitled to. Friends and family can be advocates but you can also seek advocacy support from outside agencies. 

It’s a Natural Role for Parents

As parents we advocate all the time for our young children without seeing it as a separate role. We do it automatically from the moment they are born and we continue to do it whilst they are not yet able to make informed choices themselves. As children develop, they gradually begin to form opinions and make decisions for themselves and learn how to express their views. When James’ brother Harry was 11 years old he informed me one night when I picked him up from Scouts that he had talked to the scout leader and told him he was quitting scouts. He had explained to him why he wasn’t enjoying it anymore and that he was leaving. We had discussed it briefly beforehand but he had made the decision and done it that evening by himself without my knowledge. He didn’t need me to do it for him. From then on it was a gradual process that Harry took responsibility for his own decisions whilst we were always there to advise and support when needed. As your children get older, you take more of a back seat with regard to the decisions they make about their life, their friendships etc. As anyone with teenagers knows, there comes a point where it is positively frowned upon that you intervene. It’s a natural progression and one that needs to happen.

When Additional Help is Needed

Some of our children will always need more help. They will never have the capacity to be able to make day to day decisions for themselves. They may have some understanding in which case they may be able to be involved in the decision-making process to some degree. In James’ case he doesn’t. James doesn’t know ‘yes’ from ‘no’ most of the time unless you ask him if he wants a ‘pudding’ then somehow he always knows the answer is yes!! James will never be able to express his opinions or speak for himself. He will always need people to do things for him. In such instances we find ourselves with the ongoing role of being their Advocate into adulthood. It’s a role I am happy to fulfil all the time I am able to do so.

An advocate needs to have thorough knowledge of the person they represent in order that they understand and can represent their interests. It is about their interests and needs, not yours. You need to feel confident that you are able to seek out the information and advice along the way to enable you to make the best decisions for your child.  

Give Some Thought to How You Respond

There will be times, and I have had many, when you need to respond to situations which have occurred. Finding James’ night staff asleep on shift, or James coming home from school sore from not having his pad changed properly, or James being injured by another service user are just a few examples. In some situations, it may be that the role of parent and advocate can become blurred as naturally if you feel your child has suffered an injustice then your emotions do come to the fore. As a parent you are fiercely protective when you have a vulnerable child/young adult who is unable to defend or speak for themselves. I feel the injustices that happen to James more strongly than if they had happened to me. They have hurt me and reduced me to tears many times. There have been occasions when I have responded instantly to something in anger. It can be hard not to but, most often, if you have to make a complaint it is to a service, carer or professional that you will have to continue to work with. You will want to maintain a good relationship with them. They absolutely need to know that you are angry and disappointed and the service they have delivered is not acceptable but it is not helpful to escalate a situation unnecessarily. You will not always see eye to eye with everyone but in my experience if you approach things in the right way most professionals will understand that you are coming from a place of love and that you are only fighting for your child’s rights and that you want the best for them. I have been known to say ‘if this were your child….’

If you do find yourself in a situation that you feel has not been resolved to your satisfaction, never be afraid to seek advice from other professionals involved in your child’s care. You can also always ask to speak to a senior member of staff.

Be Aware of Other Risks

As an advocate your role isn’t always to deal with situations that have already happened. You also need to be aware of potential risks to your child. They are vulnerable in so many ways. We have all seen the horrific stories of abuse on the TV. We can’t pretend they don’t happen, we need to be alert to them and prepared to ask questions and call it out if we have any concerns. I’m not just referring to the physical, sexual or verbal abuse of which we are all aware, but also financial, emotional and discriminatory abuse. We don’t like to think it’s possible but there are people in society who will take advantage of those more vulnerable individuals.

Be Organised

In your role as parent advocate you will attend review meetings, meetings making decisions  about your child’s education or future beyond school, living arrangements etc. In a previous post in Oct 2021, I spoke about how to prepare for meetings but here are some tips again:

• Keep all records of phone calls, emails, letters and meeting minutes etc for future reference, and take to meetings with you if necessary. Point out any discrepancies in the meeting minutes as there are very often mistakes.
• If you have issues you wish to discuss, make use of reviews etc to do so. If you feel the need to discuss any ongoing issues further then ask the professionals involved if you can meet them at another time too. 
• Prepare for the meeting, make notes, bullet points, write down any questions you may have. 
• If the person you are advocating for can participate in the meeting think about the most appropriate way of doing this beforehand, and also what outcomes you are hoping for.
• Be assertive, not aggressive. It doesn’t usually get you anywhere. Give clear, well thought out, logical explanations of your needs. Ask for clarity of what can and cannot be provided and why. If your requests are declined then ask for this to be put in writing. Ask how to appeal against a decision. 
• If you know a particular topic is going to be raised then research it beforehand if you need to.
• Don’t sign anything without reading it in full. Don’t feel pressurised to sign. Ask for time to take paperwork away and read it before signing.
• Ask for written information to be provided in your primary language or another format i.e. Braille. If needed ask for an interpreter in advance of the meeting. 

Assessing Mental Capacity

I’m also appointee for James and manage all his benefits and finances. Harry found it hilarious when someone from the Dept. of Works and Pensions came out to assess James’ mental capacity. I’d left the room to go and get a bank statement and Harry said the lady was asking James all sorts of questions. She got no sense out of him at all!! I appreciate she was just doing her job but we did laugh about it as it was abundantly clear James had no comprehension of what was happening. 

If you need more information about how to become an appointee, contact the relevant department dealing with your child’s benefits. 

You Don’t Have To Do It Alone

If you have family and friends then talk things through with them and ask their opinions if you don’t know the best way forward, or want confirmation that you are making the right decision. Make use of the wealth of information online too. Talk to the other people involved in your child’s care package.  We’ve had a situation recently where James has become quite unsettled on transport, is on occasions refusing to drink or eat and becoming distressed. Consistency in managing James’ behaviours is crucial so I suggested myself, James’ home staff and his two day services met to discuss this. They were all willing to participate and we were able to share our concerns and ideas on how to support James. In the majority of cases you will find staff will want to work in partnership with you to improve your child’s quality of life in any way possible and that’s how it should be.       

If you are finding it difficult to understand the care system, or are feeling overwhelmed by the enormity of the situation please seek some advocacy support. You don’t have to do it on your own. Advocacy services are available across the country and a good place to start is by contacting your local council or your care manager, they should be able to help you to seek some independent advocacy support.