Was this a tragedy waiting to happen?

I read with great sadness the news of 3 children being found dead in their home last week.  All 3 children had a genetic degenerative condition which was life limiting. The media have reported that their mother was struggling to cope caring for them at home.

As someone who has repeatedly asked for additional help caring for a disabled child, I have been persistently told that either, we don’t fulfil the criteria for more support, or we can have a little extra help for 6 months.  But then I’ll have to drum up the emotional energy and find the time to apply again, when I’ll probably be told there is no extra support available.  What this process does, eventually, is stop families from asking for help. Carers disengage and stop communicating with the services that are supposed to be there to support them. In turn, these support services are not aware of whether families are coping or not. Parents go on struggling in silence until they reach breaking point.

The Government needs to acknowledge the massive weight and sacrifice families make in caring for their disabled children at home or more and more families are going to stop coping. The huge cuts the Government have made in funding essential support services for families with disabled children has led to local authorities being unable to provide the respite and care that families so desperately need. Non Government funded charities who once could offer extra support services for disabled children and their carers, are now massively oversubscribed and are unable to meet demand. There is nowhere for these families to go for help.

Caring for a severely disabled child with complex health issues can feel like a life sentence. There is no freedom to live your life like ‘normal’ families. You cannot spontaneously visit friends and family, you cannot make any long term plans, you never have an undisturbed nights sleep and life is completely dominated by caring for your child and their needs. Going to and from medical appointments, and having long stays in hospital or intensive care becomes daily life. This is my experience of having one child with a severe disability. Multiply this by three and I can understand why it could become unbearable.

http://www.theguardian.com/commentisfree/2014/apr/27/disabled-children-and-carers-need-more-than-pity

An anxious wait…

Joseph received a letter from the Department of Work and Pensions (DWP) last week.  It instructed us to call them immediately to start the process of applying for Personal Independence Payment (PIP).  This is the new benefit system brought in by the Government to replace Disability Living Allowance (DLA), which Joseph currently receives.  This benefit pays for the wheelchair accessible car for him and for the cost of special equipment and supplies that he requires for day-to-day living.

The letter from the DWP was 5 pages long and littered with alarming phrases such as “If you don’t claim by the date on the letter, your Disability Living Allowance will stop” and “This may also stop or affect other benefits and services you get or the family as a whole gets.”   I have to say I was anxious, I’ve read the horror stories in the papers about the huge waiting times to be assessed for PIP and of people losing their DLA benefit, so I was in a hurry to contact them.

The letter arrived on a Saturday but the DWP phone line is only open Monday to Friday.  So at 9am on Monday I phoned.  I spoke to 3 different people and was on the phone for what seemed like forever, because there was a problem.  We do not live in an area where PIP is being implemented yet, as they are rolling it out gradually across the country.  The people on the other end of the phone couldn’t understand why we’d received the letter.  It was a mistake.  But the process had been started, Joseph’s name was on a list and if he didn’t apply for PIP, his other benefits would be stopped.  So I spoke to a fourth person, who said they would contact the department responsible for taking Joseph’s name off the list, if I didn’t hear within 5 days I was to call back.

Today the National Audit Office published a report regarding the implementation of Personal Independence Payment, which shows that disabled people trying to apply are experiencing “distress and financial difficulties” because of mismanagement by the Department of Work and Pensions and outsourcing firms Atos and Capita. Tens of thousands of people are experiencing severe delays in the processing of their applications.  These people include some of the most vulnerable in society. Many face long-term health conditions including physical, sensory, mental, cognitive or intellectual difficulties, or any combination of these. The DWP expects that 600,000 fewer people will receive PIP by May 2018 compared with projections for the existing DLA benefit, and they forecast to save £640 million a year by 2015.  It’s all about money, and they are taking from the most needy.

We got a letter from the DWP today, telling me we don’t need to make a claim for PIP yet and with an apology for any inconvenience they may have caused.  So things stay the same for us for now, there will be no change to Joseph’s benefit… yet.  But we have an anxious wait, as do thousands of others, who frankly have more than enough on their plates already.

http://www.nao.org.uk/report/personal-independence-payments-pip/

Sixteen today

Today is Joseph’s sixteenth birthday.

On 1st February 1998 my son Joseph was born three and half months prematurely, weighing just 1lb and 10 ozs (758g).  He had a brain haemorrhage at birth which caused irreversible brain damage.  Joseph spent the next few months fighting for his life in the neonatal unit.  But fight he did, and overcame the worst of odds.  He survived, and eventually he thrived.

We finally took Joseph home when he was 6 months old and were told they didn’t know what he’d be able to do, but he would certainly be affected by the brain injury.  At the beginning I thought he’d “catch up”, but then over the next few years came the gradual realisation that he will never sit or stand without support, never be able to speak, never be able to walk, never be independent.  But with this came the gratitude for what he can do… he can smile, he can laugh, he can make choices, he loves people, he can gain new skills, he is happy.

Now as Joseph turns sixteen and his childhood is almost behind us, I feel we are embarking on a new journey into adulthood.  The past sixteen years have been a tremendous rollercoaster ride of ups and downs, highs and lows.  There have been many times in the past when I wished I had written down my experiences so that I could share the knowledge I gained along the way.  So now I have decided to record our experiences of this new phase of our lives, for what it is worth.  I hope to make contact with and even help others in the same situation.  If nothing else, it’ll be something for me to look back on and reflect.

I don’t mind admitting that I am approaching this transition with a great deal of trepidation.  Having become a relative expert in negotiating my way through ‘Children’s Services’ and getting most of what Joseph has needed as a child, I am now faced with the prospect of losing every medical professional, every support worker, every therapist, every professional whom I have built up a relationship with, every professional who knows Joseph well.  It really does feel like going back to the very beginning again.

Whatever the next few years will bring, I am bracing myself.  I have a feeling it’s going to be another bumpy ride!