Paces

Belated farewell to Dr Sonia Sharp - heading down under to Victoria

Sometimes news travels very slowly. We have only just learned of Dr Sonia Sharp's move from Sheffield to Victoria, Australia. Are there parents and conductors active in Victoria?

This is from the City Council website in March 2012.

"Dr Sonia Sharp is leaving Sheffield City Council after being personally asked to lead on services for young children for the State of Victoria, Australia - a more senior role than the one she currently holds.

She was appointed to this senior government role because of the innovative work she has done here at Sheffield City Council for the last four years, in particular the work done to create integrated services for early childhood development.

One of her first tasks will be to establish Multi Agency Support Teams (MAST) similar to ones she has been instrumental in setting up here and which have significantly improved child safety, health and early learning across Sheffield.

Four years ago the Australian government passed legislation to make its children’s services integrated and while good work has been undertaken, there is still significant opportunity for improvement.. Dr Sharp was singled out as the person to lead this work following a global search across countries including Canada, America, New Zealand and the UK.

An announcement will be made at a future date about establishing any replacement for the role of the Executive Director of Children, Young People and Families. "

Read more on the City Council website Children's leader to head up services down under

The Sheffield Telegraph reported the story on 23rd March, though the headline writer's ignorance of her role (Executive Director -  Children, Young People and Families) does not reassure:  "Education chief heads to Australia".

Cherish the Parents

Over on Conductive World, Andrew Sutton asks "Cherish parents. Is this bureaucratically possible?"

Together, Sarah, her Mum and I are perhaps about to experience a time of enormous change. It is one we, her parents at least, are looking forward to and yet are anxious about, swinging constantly between these two extremes. Sarah is about to move into a new home, along with two of her friends.

As part of this process, we have received the following questionnaire. It is entitled "Individual Support Plan". Presumably to be filled in by Sarah, there are 7 questions:

1. My Life at the moment

2. What is important and essential to me?

3. What do I want to change?

4. What can I bring with me? (e.g. mobility car, special equipment, Informal Support, DLA)

5. How will I make, or be supported to make, decisions?

6. How will I be supported and how will I spend my budget?(Including contingency)

7. Making my plan happen. (E.g. Bank account; arrange service start etc.)

I cannot find the words to describe how this makes me feel other than that I haven't a clue how to help Sarah go about filling it in.  Do you?

Caregivers under strain - in California. Seems familiar

This came into a Gmail account I use as a sort of secondary account. I'm not sure how I came to receive it. Perhaps in the long ago, I signed up for something and have forgotten about it. Anyhow, it's from California; there's a downloadable report, it seems, but apart from that I can't see any way of giving you a link to it. Untypically, therefore, I'm going to copy and paste the whole thing as it seems so relevant to care-givers everywhere. It seems very familiar and I suspect a similar study in the UK would produce very similar results. 

I'm very happy to credit, if I have it correctly, Gwen Driscoll and the UCLA Center for Health Policy Research.

Here it is:

"Stressed and strapped: Caregivers for friends, relatives suffer emotional and financial strain

Family members or friends caring for aging or disabled individuals in California are under both financial and emotional strain and are likely to face even greater burdens, given recent cuts in state support for programs and services that support in-home care, write the authors of a new policy brief by the UCLA Center for Health Policy Research. 

The study looked at California's estimated 6 million–plus informal caregivers of all ages and found higher levels of serious psychological distress and negative health behaviors, such as smoking, compared with the general population. Of particular concern are an estimated 2.6 million caregivers between the ages of 45 and 64 who may be setting themselves up for an unhealthy future due to higher rates of poor health behaviors, compared with both non-caregivers in the same age range and older caregivers. 

"This is the 'sandwich generation,' the group of people struggling to meet the needs of both growing children and aging parents, often alone and while holding down full-time jobs," said Geoffrey Hoffman, the brief's lead author. "Caregivers need help, especially as baby boomers age and place even greater strains on their and their families' abilities to cope." 

Using data from the 2009 California Health Interview Survey (CHIS), the authors found that California caregivers provide an average of 20 hours of care per week for a friend or relative who can no longer do certain things for themselves, such as bathing, shopping, managing medications or paying bills. 

Few caregivers are paid for their work or use state services that might help alleviate both financial and psychological burdens. And with the U.S. Census projecting that the population of those 65 and older will more than double in the next 30 years, the magnitude of largely uncompensated care by family and friends will rapidly increase. 

"We may be seeing an association between caregiving and stress, where caregivers are both more likely to be seriously depressed and to exhibit certain health behaviors that put them at risk," Hoffman said. "These effects on caregivers' overall health merit attention from policymakers." 

Among the findings: 

Caregivers under stress
Mental health: More than 1 million caregivers report moderate or serious distress levels, with almost one-third reporting that their emotions interfere a lot with their household chores (29.9 percent) or their social lives (32.9 percent). 

Middle-aged caregivers struggling: Compared with both older caregivers and non-caregivers of the same age, middle-aged caregivers are more likely to binge drink (25.5 percent), smoke (15.9 percent) and/or be obese (30.1 percent). 

Stress and smoking: Caregivers of all ages who reported serious psychological distress were 208 percent more likely to smoke than non-caregivers with serious psychological distress — an exceptional amount. 

Middle-aged caregivers lack support
Nearly one-third (29.0 percent) of middle-aged caregivers are single, divorced or widowed, and more than two-thirds (67.1 percent) hold down full- or part-time jobs. Nearly one-quarter (22.5 percent) are low-income. 

Caregiving is time-intensive
Approximately one-third of caregivers who live with care recipients spend an average of 36 hours on caregiving — almost as much as a full-time job. A majority (62.0 percent) of caregivers of all ages work full or part time. 

Caregivers of all ages under financial strain
Only 7.4 percent of informal caregivers reported being paid for the help they provide.  Moreover, nearly 20 percent spent $250 or more of their own money on caregiving in the past month. The strains of caregiving may be alleviated by respite services (short-term temporary relief from duties), yet only 13.5 percent of caregivers report ever using any respite care. 

The authors note that recent cuts to California's In-Home Supportive Services program and the scheduled Dec 1. elimination of the Adult Day Health Care program will likely place even greater burdens on informal caregivers. 

"Family members and friends supporting loved ones in need provide the bulk of personal assistance services and often absorb the high costs of caregiving, both financially and emotionally," said Dr. Bruce Chernof, president and CEO of The SCAN Foundation, which provided funding for the analysis. "Programs that support family caregivers can help them create and sustain vulnerable elders in community settings, which promotes the values of dignity, choice and independence as loved ones grow older."

The authors urge support for the Community Living Assistance and Supports (CLASS) program, a voluntary, consumer-funded long-term care insurance program proposed under health reform, which would provide a cash benefit that could be used to compensate informal caregivers and to purchase needed respite or mental health services.    

Other provisions in the health reform law also offer a range of initiatives to provide in-home care to seniors and people with disabilities and reduce dependence on high-cost Medicaid nursing homes, according to the authors. Programs like the Community First Choice Option,   which provides community-based attendant supports and services to disabled individuals requiring an institutional level of care, as well as proposed new Medicaid funding for Aging and Disability Resource Centers, could significantly lift the burden off of family and other informal caregivers, the researchers say. 

Read the policy brief: Stressed and Strapped: Caregivers in California 

Read an interview with the lead author, Geoffrey Hoffman.

The UCLA Center for Health Policy Research is one of the nation's leading health policy research centers and the premier source of health-related information on Californians.  

The California Health Interview Survey (CHIS) is the nation's largest state health survey and one of the largest health surveys in the United States. 

The SCAN Foundation is dedicated to creating a society in which seniors receive medical treatment and human services that are integrated in the setting most appropriate to their needs.

More "vkkdmmg gkr" or just "******!!"

Yesterday, Sarah's Mum, while waiting for two visitors who would be arriving with a questionnaire to be filled in so that Sarah might be put on the Sheffield Case Register, decided to while away the time by filling in the questionnaire from JobCentrePlus to assess Sarah's employability.

Finding that quite enough pleasure for one morning, she decided to leave until another day filling in a third assessment of Sarah, that being a questionnaire for the Independent Living Funds. You can, after all, have too much of a good thing; moderation is all.

Yet another assessment Yet another assessment another assessment another assessment

"vkkdmmg gkr  glmkkk kkfmnkv   gjgkf nf aksnc v kdvnvkbkmvv askkcn fnv  bh cnb dnq  4 5 gkc  vjv djkdkv cnfnsj fjjvn nvjjfm dnfh  gnnbx dnncbv f nmvvmv kcjv   nnvj"

No. You've not misread. Your computer hasn't suddenly failed. I wanted to show you what the screen typically looks like when our Sarah uses her laptop. Sarah will sit and type keys randomly. Occasionally, she might ask how do something: how do you spell this or that, for instance. She likes to send emails and asks for help. Her Mum or I will do the typing to her imperfect dictation. Then she will press the key to "send". She likes her Mum's iPad, especially a drawing app. She knows all the ring-tones on both our phones and, because she has amazing hearing, regularly hears them before we do, especially if the phone is in the other room. You've got a text, she'll say, or someone's calling you - knowing whether it's her mum's or her dad's phone. She likes phones - and can manage quite long conversations on them - particularly with friends or family who know her well. She's been able to do that for quite a while.

The letter said there would be a phone call first. Then a questionnaire. Then they would determine if Sarah was fit to work. If the questionnaire was not properly completed, benefits might be "affected".  "cbvbv  fjkg f kfkkg  fjfjg  nnvkvk", Sarah might say to that.

So, of course, the letter was addressed to Sarah's Mum, whose telephone manner is restrained and polite (important as "they" are recording the phone call for legal purposes) and whose keyboard and general questionnaire-completing skills are excellent.  Actually, I'm not quite sure what the telephone call was for. Whatever it was, the person calling might has well have been one of those robotic voices the local hospital uses to check you've remembered your appointment, so little did it matter what Sarah's Mum said or asked; the caller just wanted to send her questionnaire.

An assessment. Yet another assessment. Another opportunity to demonstrate what our lovely, loving, caring daughter cannot do. Well, she cannot write and she cannot read and she can't count past 10 most days and she can't cross the road on her own and she can't get buses on her own, or dress herself or clean her teeth or cook a meal .. not even put a kettle on to make a drink. But on Sunday when her Gran had gone up to bed, she thought she heard her Gran choking and called her Mum who was in the kitchen "Nanny needs you. Quickly. Quickly, Nanny needs you". Sarah knows about strange throat noises and choking - she's been around other people of her age for whom such sounds are danger signs, help is needed. (No panic. The strange throat sound her Nanny was making in the bathroom was using some antiseptic throat wash. All was well, her Mum assured Sarah.)

Prove to me what Sarah cannot do what Sarah cannot do what Sarah cannot do what Sarah cannot do what Sarah cannot do what Sarah cannot do ....what? Again? .... Again? She's 29 years old. Do "they" not know that she's had Disability Living Allowance at the highest level since she was three? That throughout her school years she was assessed as having special educational needs? That she is a person with spastic quadraplegia? That she has had assessment after assessment?

How many more assessments will she have to have during the rest of her life? How many more people will assess her, who themselves live in their own homes, raise their own families, go on holidays of their choice, enjoy a social life with friends of their own, because they earn their salaries to pay for it all because there are countless peope like Sarah who cannot. 

People who are in work because Sarah cannot work. Cannot.

People asking utterly unnecessary questions; requiring utterly predictable answers in questionnaires; to reach absolutely foregone conclusions; causing distress to already stressed families.

So, yet another assessment. Yet another assessment another assessment another assessment xxncnf, jdfhf  dhfhf  djdjfjf fnfjvjvvif jcdjcvjvnf v vjvjjvjvnv

 

 

"Care" is not enough

"Let's not put those with learning disabilities on the scrap heap" urges John Buchingham at the "Labour List" blog.

Prompted, I suspect, by the recent abuse revelations from BBC Panorama at the Winterbourne View care home and, perhaps specifically by a speaker on BBC Question Time, the central point John makes is, in my view, an absolutely correct one:

"So let’s focus not on who owns care homes; but on changing them from just ‘care’ homes into extensions of schooling – into places where those with delayed abilities can continue to learn ...."

John opens his blog post with an observation about how, for people with PMLD, the experience of leaving school can be very different from that of most people. John is making his point mainly around communication but he might have made the point more broadly true - and perhaps does so when he writes: "Learning is a lifelong process for all of us – but even more so for those who learn less quickly and who need extra help".

As someone involved with the conductive schooling of children with statements of special educational need and then with the same group as they make the transition to adulthood, I come back time and time again to wondering what, in the ideal world, conductive education should be offering this group. At Paces, we have experimented with some innovative ideas - but have precious little funding to establish something sustainable.

The recent SEN Green paper proposes a single "straighforward plan" covering 0-25 years, which points in the right direction as far as "the family's ambitions for their child from the early years to adulthood". However, this aspiration may not have the concrete detail that John Buckingham is reaching for so that learning is lifelong for everyone. For that to be a reality for people we at Paces try to help, we all need to be asking how learning is sustained at 35, 45, 55 and older.  Simply being in "Care Homes", whoever runs them, does not go far enough, as John says.

Unlike me, they would not love her

"Unlike me, they would not love her", so said Janet Cameron, in April 2006, rejecting the option of her 24-year old daughter being in permanent care. "One day, we may have to accept that Sophie would be better off living elsewhere, that we can no longer manage. But I will feel that I have failed her again." For a year, Janet had been writing in the Guardian of being a carer for her daughter. It is evident that being Sophie's parent, her Mum, was first and foremost.

On 30th May 2006, Sophie died suddenly and unexpectedly.

Janet's last "Who Cares?" column appeared on 6 September 2006.

Sarah' like most evenings, is sitting on the sofa in the front room, drawing while listening to tapes and watching Jamie Oliver on TV. Her Mum has gone upstairs - possibly to check emails. I'm .... well, I'm writing this.  In all, a very ordinary evening. Typical even.  We've had an easy pleasant day. Indistinguishable from almost any other Saturday.  The sun shone for a while: a chance to continue tidying up in the garden, ready for spring.

We are at the point when it is becoming increasingly difficult to manage and - what is perhaps more important but probably counts for little in the scheme of things - we should like to have for ourselves what time remains to us of our own lives. 

Ideally, we would find somewhere for Sarah to live with her friend, Kirstin. But we are no nearer solving that than we were when she left school 11 years ago.  As a society, we seem to have no solution, no system to manage the transition to living independently - for young adults or their parents.

Like Janet Cameron, I find the thought of Sarah going into care unbearable. yet if something should happen to one of her parents before we get her settled, that is what will happen. Who, in care, would love her, like her Mum and I do?

Taking the negative view

A few weeks ago we had an assessment to do with our daughter Sarah's respite funding and allocation.  It was obvious that we needed to emphasise what Sarah could not do. Ten days or so later, we still felt the impact of that couple of unrelenting hours - it felt like when we looked at Sarah we saw a person who could not rather than the person we love who can.

Today I heard about and visited a new website mapping the impact of "the cuts" on the voluntary sector in England and Wales. Voluntary Sector Cuts is fascinating and worth a moment of your time. The site is a collaboration between some well-known, mostly national and regional, infrastructure organisations. Visitors from voluntary and community organisations are invited to fill in a simple form and share their experiences of the impact the cuts are having and so build "a wider picture of the scale of the challenge ahead".  (The post I was writing when I came up against "bloggers' block" was about "the cuts". ) Twitterers can follow @vscuts, too.

Earlier this week, I filled in an online questionnaire for a national carers' organisation about my experience as a carer. No doubt it will help "build a wider picture of the scale of the challenge" (to borrow those words) facing carers across the UK. Mostly it made me feel uncomfortable - partly because of the difficulty I have with the word "carer" used exclusively in such a way as to preclude my role as a Dad, which is important to me and my expereince in "caring" for my daughter; and partly likewise because it failed to address me as one of a couple who share the caring - loving - relationship we together have with our daughter. But most of all because it seemed really to want me to say how bad being a carer is.

And that's what all these three examples have in common: a relentless focus on the negative.

And it all reminds me of King Lear (Act 1.i)

Lear: Nothing will come of nothing: speak again.

"Mother who met PM asks to put disabled daughter into care"

From The Guardian, today:

"Mother who met PM asks to put disabled daughter into care
'I can't cope,' says Riven Vincent after receiving letter telling her no more respite help is available for six-year-old Celyn"

Apparently the story is on twitter, facebook and mumsnet - but you will have to search this for yourself as I don't have time just now. Sarah's gone to sleep, so I'm off to bed.

Riven's six-year-old daughter, Celyn, has severe quadriplegic cerebral palsy and epilepsy. Turned down for extra respite, Riven feels putting her daughter into care is the only answer left to her.

We've all been there haven't we?  Haven't you?

Don't Limit Mobility

What bothers me most of all as a parent is what will happen to my daughter Sarah when (all too soon) her mother and I will be unable to care for her and she will depend upon the State for her needs.

The Government is proposing to remove the mobility component of Disability Living Allowance from adults and children living in state-funded residential care.

Today's Guardian reports the publication (download free) by a group of charities of "Don't Limit Mobility" an assessment of the impact of the proposal.

"We believe that the government has made a mistake and has misunderstood how people use this important benefit. Without this vital lifeline, people in care will lose their independence, be unable to take part in activities that they enjoy and be cut off from their friends and family."