Letting go of adult son/daughter with severe learning disabilities

Discussion
1

Hi,

Does anyone have any helpful guidance on how much a mother should be involved in a Direct Payments care package for their adult son/daughter with a severe learning disability?

I have discovered that my son’s Personal Support Assistants feel that I expect too much of them, criticise them too much etc. I have written everything down that I felt they needed to know, but they have read very little of what I have written as they said it was too much to read. They just do everything their own way which I feel is difficult for my son as he needs consistency and to have things done the way he likes them done.

I had no idea that I was upsetting them! I was just trying to help! I haven’t “fallen out” with them. However, the only way I feel I can cope with this at the moment is to stand back altogether for 6 months. During this time I will only see my son when he comes for dinner with us every Thursday.

Obviously part of the reason for having a DP is to give the recipient and his family greater choice and control over the delivery of the support. However, it seems that I have over-stepped the mark and have been seen as too controlling. Any advice on getting the balance right would be gratefully received. I have searched the internet but cannot find anything relevant. I am reading “Co-dependent no more” by Melody Beattie which is helpful. However, she is talking about carers of adults who have problems (usually substance abuse) and how carers need to let go and allow the person with the problem to take responsibility for their own problems. However, my son is not able to do this due to his severe learning disability.

Kind regards,

RGB

1 Like
2

I do not know where you live, but there should be an organsation in your area to provide support with direct payments. Look at http://www.disabilitylambeth.org.uk/dasl/payments for an example of what support should be available.

3

It’s very difficult handing over responsibility for the care of our children with learning disabilities. Although their chronological age means they are adults we know they may have changed little for most of their lives. So because our children are deemed to be adults we parents no longer have any rights or responsibilities. I agree with Robert there should be an organisation in your area to support in management of direct payments but I sense that it is more about the personal assistants listening to you, the mum who really knows her son and has a wealth of important information to share. The Mental Capacity Act, Deprivation of Liberty and Best Interest decision making could be useful. In certain situations you can take on the role of Relevant Persons Representative (RPR)
Do the personal assistants come to your home when your son visits you? It’s important for them to understand where you are coming from, your background, once they see you are ‘credible’ and have much more insight into your son’s needs they will listen. Equally see their strengths and how they bring something into your son’s life that you can’t (such as energy and youth). Look at their interactions with your son and praise when there’s positive outcomes. That way they’ll accept any suggestions you make. Explain to the assistants that you want to still be involved in your son’s life and now you don’t have to do the caring you can enjoy quality time with him. Ask them how you can be of help.
It’s not easy standing back but if you have serious concerns over the care provided you may want to ask for a review and discuss safeguarding, mental capacity, best interests and find out if you can take on the role of RPR. As time goes on hopefully things will get easier and your son will have his own life with good quality care and his mum (not carer) still there for him whenever he needs ‘mum’.

4

Hello

I am also the mother of an adult with severe learning disabilities. Indeed she has profound and complex learning disabilities meaning that she is unable to communicate with words. So when she first meets new PAs she needs all her communication translated. She is a wheelchair user and has severe epilepsy and has severe learning disabilities. She is extremely vulnerable.

My husband daughter and I all live together in a large bungalow. I employ a team of 5 PAs to help me to care for our daughter.

It would be fantastic if I could let go more and let other people look after her. However I feel that if I removed myself too much from the situation the PAs would be working more in the dark. They would loose my knowledge of what works for her (which I have learnt the hard way over the last 28 years).

My daughter has a very complete care plan, which I wrote with the help of one of our PAs. It fills a lever archer file. I expect the team of 5 PAs who I employ, to write clear information about how my daughter has been while she is in their care. I do most of her night care and many hours at w/e’s. In periods of staff absence recently I have done 153 hours/ week. There are 168 hours in a week.

I feel it is essential that I remain in my daughter’s background and become more active in care as and when her situation demands it, such as during periods of her being ill.

I have just got back from a 12 day holiday abroad with my husband. I left my daughter at home with her team of PAs. I am delighted to report that we had a great time and relaxed while we were away. We came home to a neat and tidy house and even more importantly to a happy well cared for daughter.

Our care team has not always worked this well but when it does work it is a fantastic way of looking after someone.

I feel there is a need for a national forum for parents to talk to and support each other both in person and online. There have been times when I too have had trouble with employing PAs. When it goes wrong it can go very badly and very hurtfully wrong. Most parents care deeply for their children, however we are human beings who more often than is good, do more than our fair share of care. Emotions can run high. A place to let off steam and to act as sounding boards for each other is needed.

Does this letter from my heart help?

5

If you follow friendshipsmatter’s comments as a model you wont go wrong. There’s such a minefield of semantic trickery by LA’s and the agencies and multidisciplinary groups to get control of the vulnerable person (and the budget) and wrong foot the parent and make them feel defensive. So watch out. The DP is for the vulnerable persons needs not the support people.

6

I have been asked to give my views on your issue and am pleased to contribute to the discussion. I have been living Direct Payments and independent living for many years with my own profoundly disabled daughter and the friend with whom she lived.

As parents we tackled this together from the point of view of partnership between us families, with the provider, social services and the housing association each making a contribution to the complete jigsaw. We planned for the staff work in our homes for a few weeks initially which was a chance for the family to get to know the staff and for the staff to learn about our daughters in a relaxed way. This worked very well for us but is probably not relevant in your case. We also worked on various scenarios so that each knew the responsibilities of the other partners and this was also helpful. I have learned a lot along the way and feel that the best decisions are best made with those who care for our daughters rather than one partner controlling the decisions. When decisions are taken jointly it takes away the possibility of blame if things go wrong as of course they do on occasion. I have helped interview all new staff and am valued at team and house meetings.

Families are very important and should be respected and valued for the life they have given their young person so far. I was always clear that I didn’t want my daughter to be a mini me. She needed her own life and to do things which I wouldn’t choose to. As long we we all keep in mind that it is the person’s life that is important not the carers’ or the family’s, things can always be resolved. I have huge respect for the job our staff do and tell them so often - I really believe that if the staff feel valued then they will value the person they are supporting. I know it has been said many times by families that we need to let go but this isn’t a situation I recognise. I believe we families just move sideways a bit to let others take some of the responsibility of caring and in my experience they have all cared hugely. Perhaps I have just been lucky but I do believe direct payments are a great way of managing the money - it does give the power and ability to change things if it is really not working well for the person.

I hope this view is helpful and with best wishes in finding a path which will result in a good life for your son.

7

Hi

You say your son has a severe ld, therefore, I assume he wouldn’t have the capacity to manage the direct payment himself, so are you down as the suitable person. Does the dp payment go into an account in your name? If so, your the employer and responsible for controlling things. Would your son have the ability to know if he was receiving all the care that he should receive and could he tell you if he wasn’t. You talk about handing over control but the point of a dp is retaining control. Either with individual or if they do not have the ability to manage it then they will need family support. You cant have PA’s managing themselves. Whoever is the named person on the dp is responsible for all aspects of thier employment law and training, with the support of a local dp support agency.

8

Hi, Your post highlights the difficulties families can face to make sure that a Direct Payment leads to a better life for their relative. In answer to your question about what level of involvement a parent should have there are no definite rules- it is all about what works for your son and for you.
It is not clear where your son lives, whether he has only recently started to be supported by this provider and how much he is able to express whether he likes being supported by them. But I don’t think you should be left feeling you have done something wrong and that the only course of action is to stand back and feel you shouldn’t speak up on your son’s behalf. A good support provider should understand the importance of family involvement to create opportunities, share knowledge and keep people safe and well.
Your post doesn’t say how you came to hear that the Personal Support Assistants feel you expect too much of them but this is a very different matter from your level of involvement in your son’s life. It seems there is a lot that needs to be talked about with the provider and, as someone else suggested, it might be helpful to get support and advice from a local organisation about the management of DPs.
There are also a couple of resources that have been written to support families that might be helpful to you:

  • Getting it Right: A guide for families of people with learning disabilities on choosing a support provider and improving the quality of support ( free to download at https://www.choiceforum.org/docs/gettingitrightbooklet.pdf ) I worked with families in Kent who had experienced problems around DPs and we wrote this guide together to share their learning. It is written as FAQs and provides ideas about how to find solutions to common problems.

  • _Thinking Ahead: A planning guide for families (_free to download at http://www.learningdisabilities.org.uk/our-work/family-friends-community/thinking-ahead/ ). I wrote this a few years ago to support families to think about how they can put things in place for their relative to have a good life and to reduce parental worries about the future. This is also written from a parent or family point of view and offers ideas on many topics including making sure people with learning disabilities are supported to make choices about what they would like to happen in their lives and choosing the right housing and support arrangements. A section that might be particularly helpful for you is the one called ‘Keeping an Eye on Things’ which gives ideas to have a good working relationship with a support provider.
    Both of these publications suggest that families try to set up a circle of support - this could be a way in which your son and his family and friends meet together to look at things such as what is working well and what is not working and make decisions together. A good support provider would welcome this and offer to contribute as requested by the circle.
    I hope this is helpful.

9

Hi Robert,

Thanks for our reply. Yes we have a DP Support Scheme run by Penderels Trust. However, we don’t use them for anything as we have no difficulty with the employer’s responsibilities.

10

Hi Captain,

Thanks for your reply. Yes – I’m aware of the MCA, including DoL and Best Interests decision making and would always make sure these things were considered when appropriate. However, I had not heard about the role of Relevant Person’s representative so thank you for that information.

You are right – the problem is more to do with being listened to but it is also about me learning to communicate in a way that does not upset my son’s PSAs.

I’m away from home at the moment so don’t have the original email I sent to the forum and can’t remember exactly what I wrote, so please forgive me if I repeat myself! The history of all this is as follows:

My son moved into his own rented home with support over 10 years ago. He lives on his own with 24/7 support. His support then was provided by a small private company commissioned by the LA. The Provider recruited the staff. The Provider was fairly ok to begin with, but then the small company got taken over by a much bigger one. Over the years both ourselves (i.e. the family) and the staff became increasingly unhappy with the Provider. Eventually we decided to ditch the Provider and get DPs. We kept on the same staff – so two have been supporting my son over 10 years, and two for about six years. We have one or two others who are a bit newer. They are all lovely people and very caring. However, over the years that the Provider employed them were largely left to their own devices and built up some practices that I was unhappy with. They had become “too comfortable”.

We decided that we would employ the staff directly and set up and Independent Living Trust to do this. There are two family members who are trustees and two family friends. Over the last year, now that we are “in control” I tried to gradually make some changes. We had put up their wages so I felt I could expect a little bit more from them. I wasn’t actually introducing new ideas – I was just trying to make sure they all did things in the same way as my son needs consistency. I was also trying to make sure they didn’t over-support him. Some were doing far too much for him, and not giving him enough choice and control, in my opinion. I tried to praise them for things they were doing well, but did tell them when I saw things that I felt were not quite right. However, even though I thought I was doing this in the nicest way possible I obviously wasn’t. They all got upset and complained about me!

If you have a family member with some sort of disability or problem who has capacity it may be difficult but you can learn to sit back and let them take control of their own life. However, as you say, you can’t do this if your adult son/daughter has a severe learning disability and can only make the very simplest of choices, e.g. whether to have jam or Marmite on their bread. I’m not at all worried that my son is not being looked after well – in fact in some ways he is being looked after too well! I just feel that he is losing skills and being confused by the different ways that people do things. He is also not always getting things that he likes.

Of course, I was upset too by the fact that they all felt I was being too demanding! I apologised of course. I didn’t want to risk upsetting them any more so I just felt I had to stand back and let them get on with it for the time being. Nothing dreadful is going to happen to my son whilst I do this. When I am feeling a bit better I will hopefully be able to get more involved again, but I will have to make sure that I don’t make the same mistakes and upset them all again.

The trustees felt that part of the problem was to do with the fact that there was no-one who was actually in charge. So they have promoted one of the PAs to be the Team Leader.

I think I have difficulty knowing which things I should tackle and which things I should just accept. So I think what I need to do from now on is discuss things with I am concerned about either with the Team Leader or the trustees and let them help me decide whether my concerns need to be addressed or not.

So, as you can see, having Direct Payments which enables families to have more control can cause difficulties, especially for a parent like me. I have had to fight for everything for my son since birth, and it is difficult to change from fighting mode to encouraging mode!

11

Hi,

Thanks for your reply but can you explain what “friendshipsmatter’s comments” is?

12

Hi Christine,

Thanks for your reply. I don’t think that everything I was trying to communicate to my son’s PSAs was wrong but I obviously didn’t communicate these things in the right way. Please see my response to Captain. There is no Provider involved. The Independent Living Trust (4 trustees) are the employers.

Thanks for the two links. I will have a good read of these when I get home.

We did have a Circle of Support for our son many years ago but we only managed to get people of our own age involved and really it was more of a Circle of Support for my husband and I so eventually we disbanded it. We did try to get some younger trustees for our ILT, as we hoped there would be some who would still be around after our day but didn’t succeed in getting anyone in my son’s age group (he’s 33) apart from his sister. I hope we manage to get some younger people involved either as trustees or by setting up a new Circle, but it is really difficult to find young people who have the time to get involved with something like this.

13

Hi,

See my reply to Captain which explains the set up we have. Instead of having just one “suitable person” we chose to set up an Independent Living Trust. There were several reasons for doing this but the main one was that we wanted something that could go on managing our son’s DP when we become too old and also after our day.

14

Hi, your replies to the various posts help to make the situation clearer and it seems you have many of the important things in place. It sounds as though finding a trustee who is a similar generation to your daughter would be helpful - parents often say this feels hard to achieve but it seems an important part of your longer term planning. Could your son’s PAs help with this through building connections with people he meets when he is out and about? Being asked to do this could help the PAs to see their role in a more enabling light- the reverse of this seems to be one of your concerns.

15

Yes, will do, as I understand it, after hand over.

16

I don’t think there is just letting go. More a letting go within the family, as with any children as they become adult.
Friendshipsmatter’s points are very positive and proactive.
She says,
“My daughter has a very complete care plan, which I wrote with the help of one of our PAs”
“I feel it is essential that I remain in my daughter’s background and become more active in care as and when her situation demands it, such as during periods of her being ill.”
“I expect the team of 5 PAs who I employ, to write clear information about how my daughter has been while she is in their care.”
"I feel there is a need for a national forum for parents to talk to and support each other both in person and online"
Its a slight shift from your "letting go " subject but impacts on wellbeing as like you we have had a constant struggle. Not just with our son’s condition but to get his needs met by the LA who are the main problem.
I think it would help all parents to have a parents only, in person forum. To add solidarity and support in upholding the Social Care Core Values against the LA’s fettered agenda.
My email is rgcamgb@hotmail.co.uk

17

My initial reaction is to say that I admire your ability to acknowledge that the people tasked with caring for your son are finding it difficult. Particularly as you do not feel that your son is well cared for, and I do hope that he is well. The reality is that his needs appear to not be being met.

That you can state that they “just do things their own way” is more than sad. It smacks of either ignorance or complacency and in the absence of any knowledge of your family circumstance, my only suggestion would be to contact the RCN (Royal College of Nursing) either locally or via the National LD advisor for guidance - but I guess you might have already done that?

A last thought at 11.30 on a Wednesday evening - I hope you and your son have a lovely Thursday!

18

Hi, I just wanted to let you know that despite a lot of effort we have been unable to recruit younger trustees. Also we continued to have problems with staffing. Things came to a head in July. We had appointed a part-time team leader who seemed to be perfect for the job in January. She had lots of skills and it seemed that she would be able to take on things which the volunteer trustees couldn’t really cope with. However, after only 6 months she took on a full time job elsewhere as she said she needed to earn more. She began the new job before she had worked her notice with us - and without even giving us a list of any unfinished tasks which we had requested. This was the final straw for the trustees who have now had 2.5 years of dealing with all sorts of problems! They decided they were no longer able to continue in their role as employers. We have managed to retain the DP for son and get an increase in the hourly and sleep-in rates to enable us to buy in a service from a Provider. So we are almost back to Square 1 - the main difference being that if we commission the service rather than the LA then we will have more control. So now I am busy finding interested providers and doing a sort of mini-tender exercise. When we have found a suitable provider I will have to negotiate a TUPE transfer. On top of that our part-time worker is leaving this week-end as she has managed to get a job which is school hours only which is much more suitable for her as she was having child-care problems. We tried to replace her without success. We got one applicant who had no experience of care work at all and unfortunately his English was not good enough (he was from another European country). So we have our 3 full-time staff, and several reliefs, myself, my daughter to cover the hours of the PT worker, holidays, sickness etc etc. It feels like the nightmare will never end! People still keep saying I should be “letting go”! If I “let go” our son’s service would collapse completely! Social Services are well aware of the situation but the head of department says that although it is their responsibility to provide a contingency plan they would struggle to do anything to help with our staffing situation. So I just have to hope and pray that we find a good provider and that they are able to take over soon.