EVERY DAY PARENTS AND CHILDREN ARE BEING FAILED BY SERVICES
At Freedom for Kids, we’re on the front line of care for disabled children and their families. Every day we are inundated with requests for help with specialist equipment. We provide specialist pushchairs for disabled children and every week we hear from more and more parents in desperate need.
Year after year, we read reports by charities and disabled children’s organisations outlining the failings in care, provision and education. The issues are complex and there are many reasons why disabled children do not receive what they need but it is right that those responsible are called to account.
The situation faced by parents is heart-breaking but there is hope.
Where children are failed by the NHS, charities fill the ‘gap’ left by them and are a vital source of funding for families who face financial hardship. We work with the most wonderful charities across the UK, one of whom is Newlife Charity for Disabled Children. Since 2008, together we have helped thousands of families receive the right specialist equipment they need for their children at the right time, and we are honoured to be their preferred supplier for specialist pushchairs.
Without Newlife’s Equipment Grant Service so many children would simply not be able to go out. A suitable buggy is a necessity as it keeps children safe and comfortable, and allows them to be fully included in family and community life. Many children and parents are left isolated and vulnerable without this basic piece of equipment. Sadly, we know that the vast majority of disabled children who need a specialist pushchair will not be seen by NHS Wheelchair Services, and of those who do, they may only be given the most basic stroller or wheelchair that is unfit for their needs of safety and comfort.
If you are in need of help with a specialist pushchair and require charity funding, please get in touch with Freedom for Kids Helpline: 01670 343456 or email us at info@freedomforkids.co.uk – we’re here to help and support you find the right equipment and guide you to the right charity.
Below we share the key points from Newlife’s latest report.
In Newlife’s FixTheFour Report, they highlighted the crisis that parents are facing when it comes to accessing help for equipment – be this specialist buggies, beds or other vital equipment.
Three-fold increase in emergency requests for equipment from local health care professionals in the last five years.
Sheila Brown, said: “We’ve proven an emergency equipment service works, but more worryingly, that there’s a desperate need for this type of rapid response for specialist equipment for children. We must ensure that no child is in danger because they don’t have the right piece of equipment and are calling on government and local services to introduce local based emergency equipment services – it really is a matter of life and death for some.”
Some situations require specialist equipment in an emergency – when a child’s condition and associated behaviours put their lives at risk of serious injury or death. Despite most local health and social care services having jointly commissioned integrated equipment stores to cater for the emergency needs of adults, no such public service exists to respond to the urgent, often life-threatening, needs of disabled or terminally ill children. As a country we’re failing some of the most vulnerable in our society.
Sheila continues: “There’s lots of complex reasons why children are being failed. The law protects their rights to live safely, to have the opportunity to learn and to reach their potential, whatever that may be.
“This matters to every family, cancers, accidents, birth defects and infections. These risks are with us every day. No-one thinks it will happen to them. I didn’t, but that’s the reality.
“We believe that if the government ‘fixes’ the four big issues highlighted here, then hundreds of thousands of our children will benefit.”
NEWLIFE’S FOUR-POINT PLAN
We are calling on national and individual local statutory services to work with us to put in place our four-point-plan which will change hundreds of thousands of children’s lives:
FIX ONE: Cease the use of blanket bans for rationing equipment
Blanket bans are commonly used as a way to manage budget constraints. Essential equipment is denied ‘under any circumstances’, this is arbitrary and fails to respond to their assessed needs.
FIX TWO: Establish and emergency equipment response service
Children in crisis cannot get equipment quickly enough. Local statutory services don’t have an effective emergency equipment response service for children in urgent need. This needs fixing to prevent injury, to allow hospital discharge and to relieve pain.
FIX THREE: Introduce maximum waiting times for equipment assessments across health and social care
Waiting times for assessments for essential equipment are not capped, and there are widespread lengthy delays – families can wait months, sometimes years before their child is prescribed the equipment they need. This leaves disabled children living in pain or at risk of injury and their families in constant anxiety. They simply can’t wait.
FIX FOUR: Ensure every disabled child is counted
Disability registers are failing. Without an accurate measure, health and social care services cannot budget to meet the need. Local authorities must put in place an accurate way to measure the number of disabled children to ensure that no child is invisible.
Disabled children and their families are currently facing the most challenging times yet. Post-covid recovery has left disabled children facing “record breaking” delays and backlogs to health and social care services.
New research by the Disabled Children’s Partnership has revealed the worrying state of affairs for disabled children and their families in England. More than 2000 families were surveyed for the research, and their responses were eye-opening.
The research found:
50% of parents of disabled children are unable to work and have experienced poverty, because of lack of support for their child.
3 in 4 parents have had to give up employment or their whole careers, due to lack of support.
7 out of 10 parents said their disabled children’s health had deteriorated because of lack of support.
Only 1 in 3 disabled children has the correct level of support from education setting.
Only 1 in 7 families had the correct level of support from social care.
Only 1 in 5 has the correct level of support from health services.
Only 1 in 5 felt their family received the support needed for their child to fulfil their potential.
Over a third(38%) of parents have experienced marriage/relationship breakdown in the last 12 months as a result of lack of support for their disabled child.
Poverty is a contributing factor, with half of parents of disabled children unable to work due to a lack of support for their children. And more than a third of parents have experienced a marriage or relationship breakdown in the past 12 months, the survey found.
Amanda Batten, chair of the DCP, which represents 110 children’s and disability charities, said: “We now know that disabled children’s support services are so threadbare that three quarters of parents have had to give up careers they love to fill the gaps. This is contributing not only to increased poverty but also to a shrinking workforce and must serve as a wake-up call to government and local authorities.
“Our research also shows the impact on disabled children of hollowed out services. Delays in treatment, equipment, mental health support and therapies are not only ruining the life chances of disabled children, they are also putting them at risk of harm. There have been many warning signs in recent years, but this is an enormous red flag alert.
“We hope the government’s expected plan reflects this urgency. We need prioritisation of disabled children’s services across all government departments and in the coming budget.”
The government’s SEND green paper Right Support, Right Place, Right Time highlights that the current system results in poor outcomes for children and young people with special educational needs.
The DCP says the government must ensure the needs of disabled children and their families are prioritised across all parts of the public sector and that SEND reforms “do not make it harder” for parents to get the support their children need.
It is also calling on the Department for Health and Social Care and NHS (England) to ensure that all integrated care systems have clear plans for eliminating the backlogs in assessments and therapies or treatments for disabled children. And it wants the government to support families during the cost-of-living crisis by providing an energy assistance payment for families with seriously ill and disabled children, to cover the cost of running lifesaving medical and disability equipment.
The full Failed And Forgotten report will be launched by the Disabled Children’s Partnership in Parliament
At Freedom for Kids, our aim is that no child is limited by their disability, and that they have access to all areas. Our all-terrain pushchairs allow kids the freedom to explore and experience the great outdoors, enabling inclusion and engagement in more activities with their families, school, and community.
However, WE NEED YOUR HELP as we are inundated with enquiries, and the charities are swamped too. Funds are limited and charities have certain criteria that you need to meet BEFORE you will be able to access charity funding.
So, have you exhausted all other funding sources before applying to a charity?
This is particularly true if you have a child under 5 years old, as younger children are often not seen as requiring a specialist buggy or as a parent you can be unsure as to where to turn to when you find your child has a condition that requires them to be in a buggy for their safety &/or comfort. We see a lot of children who are ‘big’ for their age – they could be taller or heavier or both, and a standard nursery pushchair is simply not up to the job!
For older children, perhaps you’ve struggled on without a specialist pushchair or have one that isn’t suitable, it could have been given to you by the NHS or perhaps you have a wheelchair and need an all-terrain model that will get you outdoors and accessing more places like the countryside, forest trails and the beach. Access All Areas!
It’s important that you investigate what services you are entitled to and the NHS should be your 1st port of call.
ONCE YOU HAVE EXPLORED ALL OF THE FOLLOWING OPTIONS, PLEASE CONTACT US IF YOU NEED HELP.
These are the types of organisations you should have contacted.
NHS Wheelchair Services – your child may be eligible for equipment under Statutory Provision.
Whilst ‘wheelchair’ is in the name, don’t let this put you off as they also provide basic strollers and, in some cases, may fully pay or part pay for a specialist pushchair.
You need to be referred to this service by a Health Professional e.g., OT, Physio, GP, and there is likely to be a waiting list. You must meet the Eligibility Criteria before they will accept a referral.
To find out if you meet the criteria, we recommend that you do a ‘Google’ search for your local NHS Wheelchair Service. Look for information on their Eligibility Criteria as it may be published online. If not, give them a call and ask them if your child would meet their criteria. This will save you time as it may be that your child’s conditions are not covered. Generally, children under 3 years old are not covered (there are exceptions) and some services only provide pushchairs for physical conditions and may specify it must be for use both indoors and outside.
If you are referred and then find they are unable to provide a pushchair of your liking, for instance they may offer your child a wheelchair or an unsuitable stroller e.g. you need a recline or a larger pushchair than they can offer, you need to be able to use it off-road, so an all-terrain is a must but they can only offer one with small wheels – in England you can ask for what is often called an ‘NHS Voucher’, or the replacement for this, a Personal Wheelchair Budget (PWB).
This gives you a specific amount of money which can be used to purchase a pushchair of your choosing. It may have to meet the NHS prescription criteria, and the value is based on what the NHS would prescribe, not what you want to buy. If your quotation is more than the voucher, you can either pay the difference yourself or apply for ‘top up’ charity funding or split costs between both.
If your NHS Wheelchair Service refuses your request for a Voucher/PWB, you may want to refer to NHS England who publish a document ‘Guidance on legal rights to personal health budgets’ which includes information on disabled children and access to Personal Wheelchair Budgets (PWB). There may be different policies for Scotland, Wales and Northern Ireland, so please make sure you check as a Voucher or PWB may not be available in all countries.
Please Note: If you already have a wheelchair or specialist pushchair from the NHS and you need to KEEP this e.g. it’s used in transport (crash-tested) or it provides a high degree of postural support that is required every day, AND the pushchair you are requesting is a 2nd ‘leisure’ pushchair, perhaps as you want to go off-road or places where their current equipment doesn’t allow. Then you need to be prepared for a long wait……this is because you already have provision from the NHS and there are many children who do not have anything. Where equipment is not ESSENTIAL e.g. it’s for leisure activities / bike trailer only, then this is unlikely to be a top priority for the charities we work with.
Other Sources of Funding
The NHS is not the only source of funding and even when you can access a Voucher or PWB, you may need ‘top up’ funding if the cost of the pushchair exceeds the NHS funding. You may have been declined by the NHS or you may even be struggling to get a referral to NHS Wheelchair Services. Our advice is to get a CLEAR ANSWER on this and if you are unable to get NHS funding then you will need to look for other sources. We list a few ideas below on where to start….
Crowdfunding – it may feel daunting but places like Tree of Life or Just4Children can help you manage your fundraising ‘campaign’, or go it alone with sites like GoFundMe or JustGiving (there are others too). We’ve seen people secure funding from family, friends &/or their local community within just a few days, so why not give it a go!
Do you have a local Lions Club or Rotary Club in your area, as they may help with funding equipment. Even a local Golf Club or Social Club may undertake fundraising activities for a local family.
There may be local Business Charities, if you have a large employer in the area, check if they have a Charitable Foundation or Trust and if it covers equipment like a specialist pushchair.
Local Charity Shops may have a grant-giving organisation or know of places that can help you
Churches in your area may have funds they allocate to locals for help to buy specialist equipment
Research charities in your area – you are looking for Grant Giving Charitable Organisations. You need to check that they cover Specialist Equipment – they may not state ‘pushchairs/buggies’ specifically, however almost all our pushchairs and bike trailers are designed solely for disabled children/adults.
Can you afford it? Our advice is that if you can afford to pay then please try and do this, even if is part payment, this really helps. Charities are stretched and funds are limited. You may wait a long time or be unsuccessful as there are many families living below the poverty line who simply cannot afford this type of equipment. Most charities will ask you for financial information.
Information about Freedom for Kids
Freedom for Kids is NOT a charity. We work closely with many charities across the UK and provide a vital link between parents &/or professionals and the charities, to which we sign post families to apply for funding. We do not give out grants ourselves, this is what the charities do, and many pay us directly.
We help families by discussing your child’s needs and recommending equipment that would be suitable. We go further than just providing equipment, in that we match you to a charity and explain the process of charity funding, which differs charity by charity and can be confusing for parents and professionals.
We help with advice on how to complete applications and what happens once they have submitted their forms (to the best of our knowledge). We ONLY offer advice; we do not complete application forms or gather any personal or financial information from families other than what we need to offer advice and prepare a quotation. Contact the charity directly if you have a question on their application form.
We are dedicated to providing information and support to parents/carers of disabled children and health/education professionals. Our focus is on developing, sourcing, and supplying the right mobility equipment at the right time for every child and their family.
Our support services include a telephone helpline and online resource centre, in-person and live video demonstrations, preparing quotations and helping access funding through our Charity Match service.
Charity Match Service this is what we offer once you have exhausted all other means of funding. We will take all your information and match you against a charity that we feel you have the best chance of successfully securing funding. However, there is NO GUARANTEE. It depends on a lot of factors.
WOW! A super cool, super stylish special needs all-terrain buggy & bike trailer in one, ideal for all ages!
Now, there’s no excuse to stay indoors! The X-Roveris a brand new all-in-one jogger, pushchair and bicycle trailer for disabled children and adults. Especially suited to active parents of children and adults with special needs who want to go off-road, take to the bike trails or even run a marathon!
Exclusively available from Freedom for Kids, the X-Rover All-In-One package includes all of the accessories you need for a trip outdoors. Included in this fully-loaded specialist stroller are all the safety and support accessories you’ll need to keep your passenger safe, secure and optimally positioned. The X-Rover can accommodate a wide range of disabilities, life-limiting conditions and special needs.
Available in 3 sizes, small, medium and large and in 5 stunning colours – there’s an X-Roverfor everyone!
The X-Rover is available in 5 stunning colours – Orange, Red, Blue, Pink & Green
Safety First…..robust, rugged all-terrain buggy X-Rover is made with made from reinforced alloy with a majority of the fittings made from metal for safety and durability. The x-Rover is a safe, comfortable and practical 3-wheel buggy and bike trailer for everyday trips and for rugged off road use.
Running a marathon with your child is now a breeze!
Cycle all the way….no-one gets left behind! The X-Rover comes with a unique cycle attachment allowing it to be used as a bike trailer. Simply swap the wheel and hook it up. The Bike Cyclo Set allows you to attach the stroller to the back of any bicycle for use as a trailer-chair. The x-Rover even allows you to track your activities with an included Smart Watch to track speed and distance travelled…they really have thought of everything, now there’s no limits to where you can go!
Small X-Rovers with Windstop covers in Red and Blue used as Bike Trailers
Life with No Limits!
This is special needs all-terrain buggy with a serious EDGE, designed for use while walking, running, cycling and even skiing, whether on road or off-road, this will get your whole family active. The tri-wheel design with a swivelling, all-terrain front castor and angled rear wheels maintains perfect balance, so you can be assured your loved one is stable and secure, even when travelling off-road, at speed!! The impressive Volter X-Rover stroller features a safety roll cage with durable, aluminium-alloy chassis with reinforced parts and stainless steel hardware.
Wow, what does all that mean – well, it doesn’t fold like a pushchair, it has a solid, super-sturdy frame – think of this more like the Formula 1 Ferrari of buggies!!
There really is NO LIMITS to where you can go and what you can do now the X-Rover is here!
Small X-Rover with optional Beach Buggy Wheels
Accessorise, Accessorise!
All sorts of innovative and useful optional accessories are available, including a fully supportive chest harness, double leg abductors, head support cushion, beach buggy wheels, a canopy visor, parent pouch, messenger bag, utility bag, hand muff, adapted sleeping bag, travel bag, beach wheels, ski set and much more!
You can now visit Freedom for Kids and have a go yourself, as we offer free demonstrations for the X-Roverat our new premises, Netherton Park Farm on the Northumberland Coast. This allows you and your child to try out the equipment for size and comfort. Or if are unable to travel, why not join us for a Live Demo via Facetime or WhatsApp – we will show you all the features and you also have the opportunity to view our entire range.
For more information please contact us using info@freedomforkids.co.uk or Helpline 01670 343456 or Facebook @freedomforkids
A charitable organisation makes racing possible for children with physical limitations
At the start of a 5 km race in Eagle Mountain, Utah, a group of kids rock excitedly in their specialist pushchairs. “They’re always eager to get going,” says runner Charles Stoddard. The children won’t take a step in this race–that’s the task of volunteers like Stoddard, who push the kids in jogging strollers at various events near Salt Lake City.
Some of the runners use the Axiom Endeavour or Axiom PhoenixPushchairs, designed specially for tackling off-road terrain and all ages of children and young adults. The Endeavour is available in 3 sizes and accommodates passengers from 5 years old to teenagers in sizes 2.0 and 3.0 and adults in 3.0 and the largest size 4.0. Shown here on another race below.
Stoddard and 6-year-old Elizabeth Robison are among 14 child-runner teams geared up to get moving this chilly morning in March. The kids all have various disabilities. Many, like Elizabeth, suffer from cerebral palsy. As the mass of runners move down the mountain, Elizabeth grins. She’s unable to speak, but a few of the kids shout what organizers say is the group’s collective mantra: “Faster! Go faster!”
Push to the Finish founder Andrew McMahon.
Helping kids experience the thrill of racing was exactly what Andrew McMahon had in mind when he conceived Push to the Finish. McMahon, 37, saw a wheelchair-bound child on the side-lines of a race a few years ago, and an image came to mind of the Hoyts–the father-and-son duo who have completed more than a thousand road races with Dick, the father, pushing Rick, a quadriplegic, in a wheelchair. “I went home and asked my wife, ‘How can we get more disabled kids racing?'” says McMahon, a director of college outreach and father of three able-bodied girls. A few phone calls later, McMahon had three kids, three runners, and a race welcoming their participation.
Since that first event, Push to the Finish has helped more than 75 kids cross finish lines at 42 races. The organization pays the entry fee, so there is no cost to parents or runners; both simply register at the Push to the Finish Web site and are matched on race day. Kids are the registered participants; they wear the bib numbers and take home the medals, while runners race anonymously. “When we pass each other, we cheer on the child, not each other,” says Stoddard, 38, a 3:14 marathoner who has completed 19 Push to the Finish events.
Like many parents, Elizabeth’s mom, Freyja Robison, was hesitant to enter her child at first. Elizabeth has frequent seizures, and handing her over to a stranger seemed risky. But at the urging of another mother, and also knowing that Elizabeth might not have much time left, Robison decided “every day needed to be a party.”
Marred by cold and wind, Elizabeth’s first race wasn’t as festive as her mom hoped. But at her second event, she laughed and smiled the entire 3.1 miles, and she has now accumulated 15 finishes. “Elizabeth doesn’t show a lot of emotion, so when that happened, we knew it was right,” Robison says. Now, all three of her girls compete (Elizabeth’s twin sisters are also disabled).
Push to the Finish has become a sports league of sorts for the Robisons and other families, and the fun isn’t just for the kids. “Between doctors’ visits and therapy sessions, it can be hard to make friends and relax,” says Anita Miller, mother of 11-year-old JulieLynn, who was born with a rare condition that required doctors to remove half her brain when she was baby. “But at races, we all get to do what typical parents do on weekends with their kids.”
The program has spawned a couple of die-hard competitors. Julie Lynn has earned hardware from nearly 30 races, and when asked what her goals are, she says, “Ragnar!” referring to the 196-mile relay over Utah’s Wasatch Mountain range. Reese Thorne, 10, notched his 49th race recently. He and Stoddard finished a half-marathon last year, and the pair has their sights on a marathon.
14 child-runner teams at a race in Utah.
While the organization targets 5kms, Reese has shown that more can be better for some kids. And so McMahon is adding 10 kms, triathlons, and possibly a half marathon to the roster. “Parents tell me their kids smile more during racing season, so if we can expand that, great,” he says.
McMahon used to recruit runners through clubs, but the program now speaks for itself. Runner Kimberlee Hummel, a 49-year-old mother of four, saw the group at a race and began volunteering. “Pushing that little girl across the finish, I felt so proud,” she says of her first race.
Many runners feel a renewed sense of purpose. “Racing is no longer just about fast times,” Stoddard says. “Pushing these kids has gotten me more into the simple joy of being out there.”
It’s hard to tell who is more grateful for the program. “The runners are awesome,” Robison says. “Without their legs, our kids couldn’t go.” But runner Angela Green counters, “The runners may push the kids with their legs, but it’s the kids’ hearts that carry everyone across the finish line.”
Megan and Mum out running in the Axiom Phoenix All 3 sizes of the Axiom Endeavour – Size 2.0 (5-14yrs), Size 3.0 (Teens & Young Adults) & Size 4 (Larger Adults)
Charity Fundraising
Running for charity is a great way to be part of something truly worthwhile. Take on a fun run, 5K, 10K or even a marathon – it gives you focus, inspiration and motivation to get over the finish line as well as the chance to raise funds for your chosen charity. Imagine giving the joy of running to a disabled child. This can be an exhilarating experience for you and your child, or why not ask for a helping hand (or feet in this case!) from an experienced runner.
We support our Founder’s Charity, Ellen’s Gift of Hope, which was set up after the tragic death of one of her twin daughters, just after her 16th birthday. Ellen was a kind and compassionate soul and we raise funds to help support disabled children in the North East of England. If you would like to Run for Ellen as one of our volunteers (Ellen’s Angels), please get in touch or go to her website to download a sponsorship form. Thank you for your support, we and the families we help, greatly appreciate it.
Families with children who have life-limiting, life-threatening and terminal illnesses feel more isolated than ever under lockdown, a new study by a hospice charity reveals.
Undertaken by the charity Together for Short Lives, and launched in Children’s Hospice Week, in collaboration with Martin House Research Centre and the University of Southampton, this new study reveals that most families caring for a child with a life-limiting condition have felt even more isolated and alone than normal during the Coronavirus pandemic, with some parents describing that they feel like a “forgotten group”.
The study found that:
93% of families felt isolated during the pandemic
57% said isolation has brought up negative memories
95% are fearful that their child will catch the virus from their parent
93% fear their child’s treatment will be cancelled or delayed.
Families are missing out on vital care and support for their child while many services are still suspended.
In response, they’ve called on
government to continue to provide support for isolated families of seriously
ill children who will understandably be anxious about ending shielding and to
begin to restart urgent local education, health and care services.
We have been abiding by the shielding letter and have not left our home not even for a walk for three months now. As you can imagine this has been incredibly difficult for us. (Family taking part in the study)
Feelings of isolation were
heightened for several reasons, including the need to shield their child at
home, worries about carers coming into their home and the loss of some of their
formal and informal support.
The SHARE study is a
collaboration between The Martin House Research Centre, Together for Short
Lives, and the University of Southampton. The survey was completed by parents,
with the majority (77%) completed by mothers. Around 82% of families taking
part are supported by their local children’s hospice. So far, 44 parents have
taken part.
For families caring for seriously
ill children, feelings of isolation and loneliness are already very common, but
the coronavirus pandemic has intensified this. Many parents, exhausted after
months of providing 24/7 care for their child at home, may choose to carry on shielding
their child and family long after social distancing ends because they are
extremely nervous about the impact that contracting COVID-19 could have on
their household. The SHARE study reveals negative impacts on the wellbeing of
the seriously ill child, the parent and other family members. Parents reporting
getting few breaks from caring and no ability to engage in activities that have
previously helped them to cope, such as going out for a walk, to the shops, or
seeing friends.
We are exhausted. My partner and I are doing a job that usually takes a whole team of people. Our relationship with each other has deteriorated. My child is bored, upset and confused. He is in pain as his surgery has been delayed and he cannot have his usual therapy. His learning has stopped and he has regressed without the 1:1 he usually has. My other children have had to stay indoors due to shielding my life limited child. They are generally coping well but have some emotionally challenging days. (Family taking part in the study)
Although some parents reported
positive impacts such as spending more time together as a family and life
slowing down, most parents reported feeling physically and emotionally
exhausted. And parents’ worries and fears about the virus are also impacting on
their wellbeing.
We have always known that even the common cold could cause our child a hospital stay and ventilation. This virus has heightened our fear to another level altogether, despite the government advice that it does not appear to affect many children (Family taking part in the study)
Some of the SHARE study’s key
findings are:
98% are worried about the virus, and 98% are worried about their child’s health if they get the virus.
93% have felt isolated during the pandemic, and 57% said isolation has brought up negative memories.
89% think their child should be isolated from everyone except immediate family during the pandemic and some families have not left the house at all during the outbreak.
95% are fearful that their child will catch the virus from their parent.
93% fear their child’s treatment will be cancelled or delayed and this has been the experience for some families who have lost vital therapies for their child and had planned procedures cancelled.
59% had struggled to get nursing support during the pandemic, and 66% struggling with in-home care. 86% had experienced difficulties accessing therapies like physio for their child.
95% are worried about nurses or carers coming into their own home and are having to make difficult decisions that involve weighing up the risks and benefits of allowing people into the home.
Families caring for seriously ill
children with complex conditions and often requiring 24/7 care, need lifeline
support and care from an array of health and social care agencies. And, as they
will carry on shielding long after lockdown has lifted, it’s vital that they
get the right support. In the study, we asked families what additional support
they need. 50 per cent said they need more support from community nursing
or health visitors, 50 per cent from their GP, 66 per cent from their child’s
hospital or specialist and 61 per cent needed more support from their children’s
hospice. Importantly, parents told us that information that is specific to
their child is needed to help them make decisions about what to do next.
It feels like the shielded are the forgotten group. The rest of the world is going back to normal, but we won’t be for some time. (Family taking part in the study)
“Coronavirus has changed all of
our lives, and families caring for a seriously ill child feel more alone than
ever,” says Andy Fletcher, CEO for Together for Short Lives.
“Lockdown has been so tough, and
many families will understandably be nervous about ending shielding. The SHARE
study mirrors Together for Short Lives’ experience of what families have told
us via our helpline and family support services during the pandemic.”
“We are deeply worried about the long-term impact on children and families’ well-being and mental health. It’s vital that these vulnerable children and families get all the support they need, from government, the NHS and other vital services. In particular, we must do all we can to make sure children’s hospices can continue to provide lifeline care.”
The pandemic has hit hospices hard financially and that’s why our Children’s Hospice Week campaign is so important this year – it is vital that we pull together to protect the lifeline care that children’s hospices provide for vulnerable families today, tomorrow and long into the future.
Andy Fletcher, CEO, Together for Short Lives
The UK Government also has an
important role to play in helping families of seriously ill children to feel
less isolated. Together for Short Lives, in partnership with a coalition of
other charities are calling on ministers to:
continue to provide support to isolated families of seriously ill children who will understandably be anxious about ending shielding
clearly setting out the education, health and social care support that families of seriously ill children are entitled to during the pandemic
working to restart the education, health and social care services that vulnerable children and families rely on as quickly and as safely as possible.
The Martin House Research Centre,
Together for Short Lives, and the University of Southampton will publish the
full findings later in the year.
About the charity Together for Short Lives
We want to help
every child and family living with a life-limiting or life-threatening
condition get the very best care and support they can so they can make the most
of every moment together.
By supporting and speaking up for children and families, and
those that support and care for them, we are driving for a better quality of
life and end of life for children with life-limiting and life-threatening
conditions. We want to help change lives.
Children who have a disability that affects their mobility can find it difficult to be included in family and friends’ activities. We don’t want any child with special needs to miss out on the opportunity of getting outside and enjoying the freedom of having wind in their hair! Cycling offers a fun and effective way for children of all abilities to enjoy new levels of independence, individual challenge and social contact. Through gentle and controlled limb and joint exercises it teaches coordination and rhythm, develops body and environmental awareness and promotes strength, stamina and general health. And just the fact that they can do the same activity as everyone else is so important for them to feel included and involved.
We all remember our first bike and falling off!
Having your own bike or “wheels” is a rite of passage that sets you on the path to independence. The freedom and thrill to travel in a direction of your own choosing at your own speed…….whether it’s round your garden, a park or out with friends is second to none! Children with special needs can’t always get on their own bike. but they can still have that special feeling of freedom using a trailer, carrier or tag-a-long.
Working out how to cycle with your child when they’re not able to pedal a bicycle by themselves can sometimes seem an overwhelming task. Our experts at Freedom for Kids are here to help families understand the different options available, and if required, help you to seek charity funding where financial assistance is required.
Freedom for Kids has Special Needs Bikes and Child Bike trailers suitable for disabled children allow your whole family to explore trails, go mountain biking, cycling together in the countryside or around town. Disabled children no longer have to miss out on the great outdoors with our fantastic selection of bicycle trailers for children from 1-9 years old.
When children are babies and toddlers, there are plenty of choices, for travelling up front or in the rear in a trailer. However, as children get older and the majority move onto riding their own bikes, for children with disabilities or other special needs, it’s not always possible to move onto a two-wheeled pedal bike, so what are the options as your child gets older and heavier? Here’s a few ideas of the ways you can continue to cycle as a family as your child gets older.
Cargo Bikes
Cargo bikes are another good way of transporting children of all ages. For younger children, the new super-cool Joggster Velo combines all the advantages of our popular Joggster Pushchairs with the flexibility of a bicycle trailer and has enough space for two! Ideal for our younger passengers up to 5 years old, it can accommodate twins, siblings or one child and storage room. There are even options for a parent-facing double carrycot and a baby seat. Perfect for sporty families who love the great outdoors, you can push, jog or bike your way around with your little ones in tow!
Whilst child seats and cargo bikes are a great option and are a very popular way for parents to transport their younger children, they have the disadvantage that the child is not partaking in the cycling themselves – they are merely a passenger. Some kids are happy with that, but others will want to get involved. So, what are the options available if your child can’t make the transition to a two-wheeled pedal bike?
Trailer Bike or
Tagalong for children with special needs
A trailer bike, also known as a tag-a-long may be a good option for your child/children. They have the freedom of pedaling whilst being pulled along behind an adult bike, and can coast along when they get tired. There are a number of different options available, although most tend to just have a regular bike seat.
If your child needs more support, it’s worth looking at the two different models of the Weehoo bike trailers, which are suitable for children who can hold on but who may or may not want or be able to pedal. There are options for one or two children and cargo carriers (large panniers) for carrying everything you need on your trip out. Foot straps on the pedals and the adjustable 3-point harness with chest buckle help keep the child secure during the ride. Hand grips give children something to hold on to and the sprocket and chain are enclosed to keep little fingers grease free and away from harm. There is also a Weehoo Two available if you need to transport twins or two children by bike. Canopy and rain cover accessories are sold separately.
Trailer Trike
With a trailer bike or tagalong there is only a single wheel touching the ground. This means they may feel rather wobbly, especially at speed. This can prove problematic for some children, plus as mentioned additional assistance may be needed with the mounting and dismounting process. An alternative is a trailer trike, which has two wheels to give a good level of stability for the child being towed, and won’t tip over when you come to a halt.
Independent Bike or Trike
If using an independent bike or trike, for safety reasons, ensure you are aware of your child’s road sense and sense of danger, visual, perceptual and hearing skills and spatial awareness. Spatial awareness is a complex mental skill which allows children to understand their own location and the location of objects in relation to their bodies. In understanding this children then come to learn concepts such as direction, distance and location.
Funding Advice about Bicycles and Tricycles for children
Specialised bikes and trikes may be more expensive than standard cycles and are not funded by local authorities. We can help you find charitable funding for your child and if you’re buying a specialised bike or trike, they will be exempt from VAT. Not all our bike trailers are classed as mobility equipment and some will have VAT applied.
If you require a quote to apply for funding through a Sports Charity or one of the general disabled children’s charities, please contact us and we will be more than happy to prepare a quotation for you. If you would like to talk to us about your family needs, and get expert advice and guidance, please call us and we can talk you through the options we offer and the charity funding process. Please Call Our Helpline: 01670 458624 Today
Raising more than one baby at the same time is incredibly challenging, even when they’re healthy. It can be overwhelming when parents have premature babies or children who acquire a disability after birth. Parents who are successfully parenting two or more children with special needs, whether it be a medical condition, physical disability or behavioural challenges, emphasise the following points to help other parents:-
Support and Self-Care
Recognize that you will probably grieve for the loss of your child’s normal abilities. This grief continues throughout life, with parents saying they love their children as they are, but still wish they could have been normal. Honestly recognising and working through the early disappointment, denial, anger, guilt, and fear makes it easier to attend to your children’s practical needs.
Parents of special needs multiples often feel
isolated, not fitting in with parents of healthy multiples in local twins
clubs, but also not finding their needs fully met by groups of parents with
disabled singletons. Most parents piece
together support from a variety of sources, including sympathetic family or
friends.
Some parents reach out to other parents whose children have particular disabilities, and local and national organisations and online forums might be able to introduce you to experienced parents who can offer guidance in coping with your child’s situation. Those who have suffered the death of a child and have survivors with special needs might find parents who have confronted similar challenges through loss and bereavement services. Many parents find valuable support through the Internet and organisations devoted to their child’s medical condition. Parents may remember their lost ones on special occasions and birthdays by including a symbol such as an angel or butterfly on the cake, or plan a balloon release, a moment of silence, a poem or prayer reading.
Parents often neglect caring for themselves and the healthier children in their family in their efforts to meet the needs of their challenged children. This can lead to burnout, deterioration of a marriage, and even temptation to abuse or neglect disabled children. Eat and sleep as well as you can. Make regular dates with your spouse, arrange holidays and respite (rest) breaks to get away from the situation, take time for hobbies, and spend private time with your healthier children.
Train other family members and friends to care for your children so you have dependable babysitters. This is also important in case of an emergency (for instance, your own hospitalisation or urgent travel). Reliable help with child care and housework is a high priority for any family with multiples, and is essential for your sanity if your children have special needs. Parents should work out a fair division of duties, to avoid one overworked spouse building up resentment. Recruit assistance from family, friends, neighbours, churches, community and charitable organisations–it’s no time to try to be Supermum! Accept all offers of help, and tell people specifically what they can do to help you.
Depression is more common in parents of
multiples in general, and is even more likely if one or more of your children
have died or are disabled. The more
overall stress, daily hassles and disability-related problems you have to
contend with, the greater your risk of depression. Seek mental health care if
you feel you’re having serious trouble coping, because effective treatment of
your own depression will lead to your children getting better care from you.
Parenting
If your children were born two or three months early, it might be quite awhile before they smile, hold their head up well, or roll over. This delay in development and social responsiveness is discouraging to many parents, especially if children require a lot of care and parents aren’t getting much feedback in return. Many parents find they get more attached to one child than another when one is more fragile after a premature delivery, or if only one has special needs. Most often it’s the healthier one that’s easier to love. Try to recognise when you’re playing favourites, and avoid labeling your multiples with terms like “the clever one, the disabled one” etc. Some parents after a premature delivery, when the children’s chances for health or survival are uncertain, protect themselves by trying not to get too attached to any of them. This is a normal coping mechanism, but might delay bonding. It may take months, especially with premature babies, but you should gradually fall in love with all of your children.
Your feelings about your child’s disability may be frustrating and even scary. Remember that you are grieving the loss of your child’s normal abilities. Depression, feelings of rejection or anger toward your disabled child, fear of overprotecting a healthy one, feeling overburdened at the prospect of caring for two or more disabled babies, guilt at having delivered prematurely and somehow failing your children–all of these are common reactions. Don’t expect more of yourself than you can reasonably accomplish. Adjusting to a child’s special needs is a slow, gradual process. It may be harder if your child has delays mentally, language delay, deafness, or a severe disability requiring round-the-clock care. Most parents do find their lives less stressful when children reach school age.
Parenting premature or disabled multiples is a
complicated juggling act, and you need to set priorities that work for your
family. You may not be able to promptly
arrange or afford evaluations and care for each child at the same time. I’ve
known parents with two disabled children who postponed investigations and
therapy for one child because the needs of the other were more urgent. Still, be alert for mild problems in your
healthier multiples while you’re dealing with your more seriously affected
children. Most importantly, all of your children, whether disabled or healthy,
need affection and mentally stimulating, enriching experiences at home.
Your children need to be treated as normally as
possible. Set limits and discipline them
as you would a child without a disability.
If you have one disabled child and one healthy, it is important not to
hold back the healthy child’s development in order to keep them “more like
twins.” Older and younger siblings need one-on-one time and attention to
their concerns, too. Care must be taken to ensure the healthier children are
not overly burdened with caregiver tasks (bathing, dressing, changing,
therapies, etc.) They may be quite
attached to their disabled sibling and want to do everything in their power to
help, but it is important for them to form friendships with other children
their age and to have freedom to play, leaving the adults to manage the special
needs child’s care. Balance is the key. Reading children’s fiction
books about disabled multiples may help both your healthy and special needs
children feel less alone in their situation.
Economics
Money problems are a major burden for many families with special needs children. Government assistance may not cover many services, or may impose a limit on reimbursable costs that parents with high-needs children will quickly reach. Many services are income-based, with more help available to low-income parents. Contact Freedom for Kids Helpline on 01670 458624 if you need help with Specialist Equipment. Local twins & multiples clubs, charitable organisations such as Twins Trust (formerly Tamba) may be able to give advice on funding help available for special needs such as ramps, lifts and changes in your home to accommodate your child’s disability.
Clinical
Visiting babies in the hospital after a
premature delivery can be stressful, and for some parents the neonatal
intensive care unit will be a second home for months. Learn early about the hospital’s rules and
routines. You should be respected as an
important person in your children’s lives, and encouraged to take part in their
day-to-day care. Try to spend equal time
with all of your children, or more time with a very critical child. Parents who
feel confused, helpless, or guilty due to the prematurity or disability of
their children often feel unworthy of making demands on busy medical
staff. You need to clearly understand
your children’s medical conditions, and can ask for written handouts about your
children’s illnesses and references to good books about premature babies. Ask
for support from the social worker, who might be able to help with
transportation needs, or help you find babysitters for older children so you
can spend more time at the hospital. If one twin is home and healthy and the
other is hospitalised for a very long time, see if your baby can come home for
a day on a pass, so siblings and the healthy twin can spend some time away from
the hospital with the child who is ill. When it’s time for discharge, be sure
you’re comfortable and familiar with any equipment (monitors, oxygen, feeding
tube or tracheotomy, etc.) and that a nurse will check on the babies once they
are home. Some babies must avoid exposure to others for many months due to risk
of infection. This is isolating, but try to keep in touch with family and
friends by phone, letters and photos until the doctor okays personal visits.
Some developmental delays don’t become obvious
until months or years after delivery.
You should closely question your babies’ doctors if you become concerned
about your children’s growth rate or skills. Doctors don’t like to diagnose
cerebral palsy, autism, and some other conditions too early. Your child may
receive therapy for months without a clear-cut diagnosis, and the therapy, not
the medical label for your child’s condition, is the most crucial influence on
their future outcome. Once multiples reach school age, more subtle learning
disabilities may become apparent, especially if they had very low birth
weights. Be alert for problems once they enter school and keep pressure on
doctors and the school system to have realistic concerns properly evaluated.
As your children grow, find doctors and
therapists that you can work and communicate with. A paediatrician experienced with special
needs children can help coordinate your child’s care with other specialists and
therapy providers. Don’t assume professionals always know what is best for your
child or that they have all the answers. ASK QUESTIONS if you don’t understand
what a doctor has told you about your child’s condition, or are unsure how to
perform therapies, when to give medication, etc. Don’t be afraid to second-guess
recommendations that you feel won’t work for your child. If you have doubts
about the diagnosis or treatment recommendations given by your child’s doctor,
and before any major procedure or experimental treatment, get a second opinion
from another qualified specialist. Be realistic in trying to accomplish all the
tasks that different specialists and therapists have assigned you. One woman calculated that her son would
require eight hours a day of therapies and treatments that different
professionals prescribed, and somehow she was supposed to coordinate meals,
naps and time with her healthy child in the course of a day also! You can only do your best, and make sure your
primary pediatrician realizes the full burden of care that your child requires.
Information/Internet
Do your own homework and learn as much as you can about your child’s condition. Write to organisations dedicated to your child’s illnesses. Some local or national parents of multiples groups may have collected valuable information on your child’s disability. Internet medical information and e-mail support groups or bulletin boards can be helpful, but be careful, since medical information in particular is often unreliable.
Some parents feel compelled to find every last
piece of information written about their child’s condition. This apparently unreasonable search for
information is part of the coping process.
Every parent wants to make sure their child receives the best possible
treatment and that no stone is left unturned where there may be hope of a cure
or improvement. If others criticize your search for reliable advice, remind
them that you are motivated by your love for your children and your desire to
see them get every possible advantage. Before acting on any information you
locate, make sure that it is accurate and review it with a knowledgeable doctor
or therapist.
Advocate
You are your child’s best advocate. You’ll need to be assertive to get services, financial aid, information, help from medical professionals, and optimal responses from the school system. It can take a lot of phone calls and letters, but persistence pays off. Choose your battles wisely and prioritize. It helps to be organised: keep a list of “Things to Do”, and a medical calendar for doctors’ appointments, therapies, medication start and stop dates, supply ordering, etc. If you have the time, energy and motivation, many parents find it meaningful to educate the public about children with special needs in general, or their child’s illness in particular. Education decreases ignorance and discrimination toward those with special needs.
The earlier children with special needs can get appropriate therapies and intervention, the better. Listen to your instincts, and keep the pressure on to get whatever testing needs to be done to verify whether a problem exists. Don’t be dissuaded by professionals quoting “twin myths” about twins always talking later or developing motor skills later than singletons. If you feel there is a problem, it is worth discussing with someone knowledgeable. The best person may not be your general pediatrician, but instead a therapist or paediatric specialist.
Advocate for your child in social situations,
too. Friends, family members and parents
of multiples clubs may need to learn how to include your child in their
gatherings. Ask about wheelchair
accessibility and accommodations for your child’s medical needs, schedule and
temperament. Talk with them in advance
about your child’s abilities and difficulties, and invite them to talk and
interact with your child, remembering that your child is a PERSON first–the
disability comes second! Children with
behavioral difficulties can become overwhelmed in noisy, crowded
locations. Use common sense when
planning outings, and be flexible in limiting time spent at long events if your
child tires easily.
Learning
Your child’s education is vital. Contact local education services to find out about early intervention and special education services, and identify local school and national resources. Bring someone with you to Individual Education Health Care Plan meetings to help take notes while you talk with teachers, and prepare a list of concerns and questions in advance. Many multiples, especially low birth weight children, can develop subtle learning difficulties as they grow older. Be aggressive in demanding assessments if you feel your child isn’t working up to his or her potential, and insist on whatever adaptations will help your children learn their best. Networking with other local parents of special needs children can give you insight into how responsive and sympathetic your school district is.
Separating healthy and disabled multiples may
be difficult for them in school or preschool. It is best to delay or limit
separation when possible, since the relationship between multiples is a crucial
coping mechanism for many children. A visit by each child to siblings’ classes
reassures them all that their siblings are in good hands while they are apart.
It also allows classmates to accept and interact with children who have
differences.
Be sure the school knows that your child is a
multiple. Sometimes teachers think a child is a singleton when a disabled twin
is at home, a healthier multiple is at a different school, or a child’s
co-multiples have died. Teachers and counsellors
responsible for each child’s welfare need to know about multiple-related
psychological issues for both children and parents, especially the practical
difficulties of juggling several children’s needs.
Conclusion:
Children with challenges, like all children,
need love and care in order to thrive. Seek support and information, and
respect the unique bond between your multiples. Look for hidden blessings in
your situation, including other wonderful parents and special children you will
likely meet. Be optimistic but realistic. Take care of yourself, your spouse
and other children as well as your children with disabilities. Aggressively
seek financial and practical help from others.
Advocate for your child with medical providers and the school system.
Most of all, realise you’re not alone in your struggles. Others have paved the way and are more than
willing to share their discoveries.
Support Organisations :
The Twins Trust has a specialist support group and co-ordinator for families with special needs multiples. Contact them at :
Twins Trust Manor House, Church Hill, Aldershot, Hants, GU12 4JU 01252 332 344
Finding a flexible seating system can be an overwhelming task but we’re here to help you find the best one for your child. There are a few basic questions that you need to ask yourself. Here are four to get you started.
Home: Special needs seating systems at home can be diverse. One type of adaptive equipment that is versatile enough to meet many different applications for special needs seating are the Special Tomato Soft Touch Sitters. These adaptive seating systems comes in 5 sizes and 3 different bases that can be fixed or on wheels. This versatility allows this special needs seating system to be used throughout the home for different purposes.
School: In a school setting, mobile seating systems offer the ability to keep a child positioned in their seating system, but still move them around the classroom to different stations as well as move them around the school. This cuts down on the need for multiple seating systems saving the school money. It also allows the child to spend more time learning and interacting with others. The Soft Touch Sitters can be used on Mobile Bases or on Special Tomato Pushchairs allowing a child to use them indoors or on school trips outdoors.
Around the Town: Special needs portable seating solutions are a great option for children who need some support to sit up, but either don’t require a wheelchair or, the wheelchair is too bulky or unsuitable to access where you want to go. The Special Tomato Sitter (and Special Tomato 2-Piece Liners) are designed to give pelvic, and trunk support, for those with mild positioning needs. Another part of their design is that they are created to be portable and versatile to attach to a variety of standard chairs, bases or pushchairs.
The Special Tomato Soft-Touch Sitters are an adaptive seating system that provides support in a variety of sitting positions. The Soft-Touch Sitters come in four different variations:
Sitter Only
Sitter with Floor Wedge (Sizes 1 – 3 Only)
Sitter with Stationary Base
Sitter with Mobile Base
All of the Sitters come with Attachment Straps as a standard feature. This allows you to securely attach the Sitters to a stable dining chair, classroom chair, Special Tomato Pushchair or any of the Special Tomato Bases: Floor Wedge, Stationary Base or Mobile Base.
Getting Around: When it comes to special needs equipment, mobility is of paramount importance. The ability to move freely is essential for child and carer, providing children with solutions for interacting and engaging like never before. Using a mobile special needs seat means a child can easily be rolled from one room to another for mealtime, playtime, bath time and beyond, providing your child with extra freedom of movement.
Getting the Right Size: It is always important to order a special needs seating system to fit your child now. However, you also want to make sure that there will be years of growth available in the adaptive seating system that you purchase. Most special needs seating systems have plenty of growth built into them. Your child’s most important measurements for fitting a special needs seating system are:
Hip Width – corresponds with width of the stander
Chest Width – corresponds with width of the stander
Shoulder Width – corresponds with width of the stander
Seat to Top of Head – corresponds with height of the seat back
Seat to Top of Shoulders– corresponds with height of the seat back
Thigh Depth – corresponds to the seat depth
Foot to Back of Knee – corresponds to the footrest to seat height
Weight – corresponds with the maximum weight capacity of the stander
The Sitter with Floor Wedge allows for your child to be fully supported while on the floor. This level of seating is great for interaction between children with special needs and peers that are playing on the floor. The Stationary Base allows children to be close to the floor without caregivers having to transfer them all the way down to the floor. The Stationary Base is equipped with furniture glides to protect your floors. The Mobile Base is the same as the Stationary Base, with the addition of wheels to allow you to move your child around the room or from room to room. Whether it’s circle time at school, playing with friends and siblings at home, eating with the family at the dinner table or “chilling out” with the rest of the family at home, the Special Tomato Soft-Touch Sitters provide exactly the flexible and adaptive seating support that you and your child needs.
The Special Tomato Sitters are intended for children with mild to
moderate positioning needs. The special needs Soft-Touch products are made from
Special Tomato’s soft to the touch material that has anti-microbial properties,
is impermeable to fluids, as well as latex-free and peel- and tear-resistant.
Standard Features Include:
Attachment Straps for different Sitter Bases, other standard chairs and strollers
Soft contoured seat with anti-thrust seating surface
Built-in abductor
Contoured head and lateral supports
Adjustable 8-point positioning harness that is removable for cleaning
5 Year Manufacturer’s Warranty
Is this Product Right for You?
Support for the head back and pelvis is needed in a seated position
Supported sitting is a goal for your child
Be sure to check Seat Depth, Seat Width & Seat to Top of Head Height to find the right size
Questions? Our experienced parents are here to help – Call 01670 458624
Our experienced staff can help you with a proper fit… simply call us on 01670 458624 for advice and support.
Newlife has launched a new parliamentary group this week for MPs to focus on making it easier for families to access specialist equipment for disabled and terminally ill children.
Newlife the Charity for Disabled Children launched the first All-Party Parliamentary Group (APPG) on Equipment for Disabled Children in the House of Commons on Tuesday 10th March.
Politicians from across the political spectrum gathered for the inaugural meeting and are committed to improving policies that affect the lives of families with disabled children across the UK.
APPGs are informal, cross-party interest groups of MPs and Peers interested in a particular issue. Newlife has campaigned for the group to be established for several months in a bid to remove barriers that often prevent disabled and terminally ill children from receiving the right equipment at the right time.
The APPG on Equipment for Disabled Children is chaired by Enfield Southgate MP Bambos Charalambous. Its other members are Peninstone and Stocksbridge MP Miriam Cates; Bristol West MP Thangam Debbonaire; Islwyn MP Chris Evans; Lichfield MP Michael Fabricant; Airdrie & Shotts MP Neil Gray; Henley MP John Howell; Falkirk MP John McNally; Lord Chris Rennard; Strangford MP Jim Shannon and York Outer MP Julian Sturdy.
It will respond to the issues Newlife has identified, try and identify solutions and shine a light on best practice.
Clare Dangerfield, Newlife’s Campaigning and Public Affairs Manager, said: “Every day we hear from families who are struggling to get the vital equipment they need to keep their disabled child safe and comfortable, which is what any parent wants. We are delighted to launch the first APPG on Equipment for Disabled Children as it heralds an important step towards making vital policy changes across the country to help ensure children and their families get the right equipment at the right time.
“Working across government, the APPG will investigate the reasons that children are suffering and make recommendations for improvement. We know there is not a quick fix but our voice will now be heard at the heart of Government and, through us, decision-makers are listening to the very real struggles families are facing and trying to find ways forward.”
The APPG’s initial focus will be on Newlife’s #fixthefour campaign which aims to tackle the UK’s equipment crisis facing disabled children and their families. It was launched in 2018 and is a four-point plan which is committed to:
ceasing the use of blanket bans for rationing equipment
introducing a maximum waiting time for equipment assessments
establishing an emergency equipment response service
ensuring every disabled child is counted.
For the last year, Newlife has been lobbying statutory services which refuse to provide specialist car seats to disabled children ‘under any circumstance’ – effectively having a blanket ban in place, something barristers advised was potentially unlawful.
Just 18 months ago, 83% of local authorities across the UK had blanket bans in place on the provision of specialist car seats but today more than 55% of councils can provide car seats following Newlife’s campaign to get them overturned.
CAPTION: Pictured at the launch of the All-Party Parliamentary Group on Equipment for Disabled Children are (left to right) Co-founder and CEO of Newlife the Charity for Disabled Children Mrs Sheila Brown OBE, Alex Hanrahan from the British Healthcare Trades Association, Lord Chris Rennard, Chairman of the APPG Bambos Charalambous MP, Newlife’s Campaigning and Public Affairs Manager Clare Dangerfield, Neil Gray MP, Newlife’s Operations Director Stephen Morgan and Newlife trustee Kathryn Griffiths.
