If I can help even one parent through difficult times, it will be worth it

Guest post from Rahna (above right), a befriender at Scope’s new Face 2 Face service in Redbridge and Waltham Forest, London. Befrienders offer emotional support to parents of disabled children – and they all have disabled children of their own. 

Rahna’s daughter Husna, 15, has a rare progressive condition called Friedrich’s ataxia.

My daughter Husna was four years old when she began to display the symptoms of Friedrich’s ataxia and Asperger’s syndrome, and we finally received a diagnosis when she was eight.

Rahna and 15-year-old Husna, a wheelchair user, outside their house
Rahna and her daughter Husna

Friedrich’s ataxia is a rare inherited disorder that causes progressive damage to the nervous system. We were told that Husna would gradually lose the use of her legs and arms, become blind, deaf, lose the ability to eat, swallow and speak.

There was nothing we or anyone else could do. For a parent, there is nothing worse you can hear.

How I felt

My world had fallen apart. I was dealing with my own emotions and everyone else’s. Every day was a struggle, and normal life as I knew it no longer existed.

I remember desperately wanting to speak to another parent whose child was going through a similar experience. It wasn’t until years later, when Husna started at a special school, that I found out that any kind of support existed.

Four female audience members applauding
Rahna (second from left) at the service’s launch earlier this month

I always had a lot of support from family and friends, but I felt unable to share all my feelings with the people around me – I was seen as the strength holding everyone up.

And although everyone was being so kind and helpful, no one really understood what I was going through, because they hadn’t been there themselves.

Why I became a befriender

Parenting a child with such complex issues is mentally, physically and emotionally exhausting. The day never comes to an end – it just merges into the night which merges into the next day.

You have to cope with so much, and to be able to speak to someone who has been through similar experiences, and share your anxieties and fears with them, really helps you feel less alone.

I first heard about Face 2 Face when I was approached by Andrea, the coordinator, at my daughter’s parents evening. Immediately I knew it was definitely something I wanted to do.

The training has been almost like being at a support group – everyone felt relaxed and we were able to express ourselves and talk about our personal experiences, knowing we were all in the same boat.

Group of befrienders holding their certificates
The newly-trained befrienders

I would have benefitted tremendously from a service like Face 2 Face if it had been available when Husna was younger. There were times when I was feeling very low emotionally, and really needed to speak to someone who understood.

If befriending means I can help and support even one parent through such an emotionally difficult time, then it will be worth it.

We’re launching four new Face 2 Face services in London this summer, and there are more across the country. Find a service near you.

What did we learn from the Queen’s Speech?

On Scope’s blog on Wednesday we set out some of the things that disabled people were looking out for in the Queen’s Speech. So what did we learn about what we can expect in the new Parliament?

As expected, a Full Employment and Welfare Benefits Bill was announced, reflecting both the Government’s ambition of supporting more people into the workplace and plans to reform and find further savings in the welfare budget.

The bill will place a legal duty on the Government to report on its progress towards achieving full employment. The gap between the employment rate for disabled people and the rest of the population has remained static for over a decade. The Government recognised in its Manifesto that to achieve full employment, we need to halve the disability employment gap. Whilst the details of how progress towards this goal will be measured are not yet clear, for Scope it’s essential that disabled people are central to this conversation and are better supported to access the jobs of the future.

The bill will also set out measures to freeze the majority of working age benefits from 2015 to 16 onwards. The Chancellor has consistently stated that the Government plans to find £12bn of savings in the welfare budget in this Parliament. However, the Queen’s Speech also reiterated that benefits relating to the additional costs of disability will be excluded from the freeze, which is certainly welcome.

DLA (Disability Living Allowance) and PIP (Personal Independence Payment) have a vital role to play in supporting disabled people to meet the extra costs of their disability. The Prime Minister recognised this before the election and indicated that he planned to ‘safeguard’ and ‘enhance’ PIP. Scope will now be looking to the emergency Budget on 8 July for additional detail about where savings in the welfare budget are likely to be made and for detail on how the value of extra costs payments will be protected in the new Parliament.

Social care plays a vital role in supporting disabled people to live independently, and on Wednesday there was further confirmation that the Government will continue its commitment to integrating the health and social care systems.

Whilst this continued prioritisation of integrated care is welcome, Scope is concerned that despite increasing numbers of people needing care support, fewer people are getting it. Investing in the health system must be matched by an investment in social care. Working age disabled people make up one third of social care users and just under half of social care expenditure. As such, they must be seen as a priority in the development of the integrated care system, and initiatives such as the Better Care Fund must be made to work for disabled people.

A big talking point ahead of the Queen’s Speech was the Government’s plan to replace the Human Rights Act with a British Bill of Rights. However on Wednesday it was announced that these proposals will not be put forward in the first year of the new Parliament. The Human Rights Act provides critical protection for disabled people and we will be closely monitoring any developments in this area.

Elsewhere, a new Charities Bill will make it easier for the voluntary sector to undertake social investment as well as protecting charities from abuse and strengthening the powers of the Charity Commission.

The Government also gave further details of how powers will be devolved to cities and regions across England. This move towards decentralisation has the potential to offer improved support for disabled people in a number of areas, including employment and care support. It’s important that disabled people are seen as a priority group in the individual growth deals moving forwards.

The overarching theme of yesterday’s Queen’s Speech was delivering a ‘one nation’ agenda, and the Prime Minister repeatedly expressed his desire to “bring our country together”. The July Budget and subsequent Comprehensive Spending Review will go a long way towards setting out the detail of how he plans to achieve this. One thing is clear – if he is to realise his ambition, disabled people must be front and centre of his legislative programme.