What in the world is CPIP? And why is my child part of a surveillance program?

If you live in the UK and have a child diagnosed with cerebral palsy (CP), then chances are you will have heard of CPIP (Cerebral Palsy Integrated Pathway). Nowadays, most children with cerebral palsy are monitored through CPIP – but what exactly is it, and why are children being monitored in this way?

The concept of CPIP is all about monitoring the hip joints of children with cerebral palsy. Children with a cerebral palsy diagnosis have a risk of their hip joints (the ball and sockets) gradually moving out of place, known as hip displacement or ‘hip subluxation’. It is the second most common muscle and bone issue affecting children with CP, and importantly is directly related to a child’s ability to move.

Twenty years ago, Sweden decided to address this concern with CPUP, a follow-up programme for children with cerebral palsy or suspected cerebral palsy.

Their goal was to implement standardised monitoring for the early detection of muscle and joint changes that could indicate a potential risk of hip displacement. When values dip below specific thresholds, it prompts a variety of interventions and treatments, spanning from hydrotherapy and assistive equipment to botulinum injections and surgery.

This programme marked a turning point for CP care in Sweden, has fundamentally changed care in Sweden and demonstrated that early detection leads to early intervention which, in turn, leads to reduced chances of hip problems.

Their data showed that hip surveillance programmes like this dramatically reduce the number of children suffering a hip dislocation to less than 1% and reduces the number requiring orthopaedic surgery to less than 15%.

The UK’s adaptation of this program, known as CPIP (Cerebral Palsy Integrated Pathway), follows a similar approach.

It involves standardised clinical examinations and regular hip X-rays for at-risk children based on age and severity. The initiative aims to identify issues early and provide appropriate treatments, effectively minimising the risks associated with hip displacement. You can learn more about the main strands of CPIP here >>

But the UK is not the only country who has adopted a surveillance programme like this. The CPIP model has been adopted by many countries across the world, including the USA and Australia. You can read more about the programmes that run in your region below:

Freedom to shop for USA families

We are delighted to announce that the Firefly GoTo Shop is now available across every Wegmans store in the US!

The announcement comes after Wegmans initially trialled the adapted shopping cart in their Pittsford and Alberta Drive stores as a result of tireless campaigning from our wonderful community.

The trial carts received some great feedback from parents; NY mom, Liza Rudroff, played a vital role by following up upon requests to get a GoTo Shop in her local Wegmans store.

She was delighted to finally try it out in the Pittsford Store with daughter, Sydney.

“She had a great time shopping with me and it was clear she felt comfortable and safe. Placing Syd in and out of the cart was also effortless. The cart handled extremely well and I like the placement of the handles for pushing. This was honestly the first time I was able to shop without worrying for her safety and I can’t tell you how good it made us feel!”

After the positive response to the trial carts, Wegmans quickly recognised there was a true need for the GoTo Shop within the community and were eager to be the first US supermarket to roll the cart out across all stores.

At Firefly, we are delighted to partner with Wegmans whose company values align with the GoTo Shop message and we look forward to working together to promote inclusivity across US supermarkets. Wegmans Community Relations Manager, Linda Lovejoy, told us:

“At Wegmans, we are committed to providing incredible customer service to all our shoppers, and we’re always looking for better ways to make our stores accessible to everyone. When Liza brought this cart to our attention and shared her family’s need, we recognized that there are more families, throughout all our market areas, who would benefit from the availability of this cart at our stores.”

This amazing result just goes to show what our community can achieve together.

But the hard work doesn’t stop here, it is our mission to see a GoTo Shop in every retail store around the world and Wegmans is one step closer to achieving that.

We are confident that this is just the beginning for the GoTo Shop in the and, with some encouragement, other retailers will soon follow suit.

If you want to see a GoTo Shop in your local store, we need you to get involved and let them know.

You can do this by simply downloading a campaign leaflet and handing it in to your local store manager.

If you would like more information on how you can get involved, just email [email protected]

Accessible Shopping Survey – The Results

In a recent survey we asked our online community to share some of their thoughts and experiences when shopping with their child.

The results are in and we plan to use the findings to support the GoTo Shop campaign and show retailers how they can make their stores more accessible to special needs families.

So, what did we learn?

Our survey was undertaken by parents of children aged from 13 months to 25 years with a variety of conditions such as Cerebral Palsy, Down’s syndrome, Autism and Metabolic Disorders.

86% of participant’s children were wheelchair users.

We asked parents what their preferred method of food shopping was; only 7% chose online while the rest preferred to physically go to the store or a combination of both.

However, 66% then went on to say that they have, at one point, felt forced to shop online due to accessibility issues at their local supermarket.

This highlights the need for retailers to be more inclusive because, although parents want to shop in their stores, they feel that it is not always an option.

The majority of those asked said they choose to take their child shopping with them but 85% find supermarket shopping to be a challenge.

We asked parents to expand on exactly why this is the case and found that the majority of participants found supermarket shopping to be a challenge because of issues surrounding inaccessible shopping carts.

In fact, 63% described a problem with pushing a cart and wheelchair simultaneously or that there was no suitable cart available to them.

“We need 2 people if we want to shop with our son, one to push the cart and one to push the wheelchair. Otherwise, I can only grab a few things”

A further 6% stated they needed to arrange childcare in order to carry out their supermarket shopping.

“I cannot take my son shopping so I have to fit it in around school hours”

When asked what additional features parents would like to see in their preferred store, 60% said they need an accessible changing area and 49% an accessible shopping cart.

One of our most overwhelming statistics shows that 91% of parents said they would be willing to travel to an alternative store if they offered a more accessible shopping experience.

This highlights the importance for retailers to be more inclusive or face losing customers.

Similarly, if supermarkets were more accessible, 58% of parents said they would be more likely to spend a longer amount of time instore; a considerable benefit to the retailer.

The survey has given some valuable insights into the issues faced by parents of special needs children and provided findings we can present to retailers in the hope they will strive to provide a more accessible shopping experience to ALL their customers.

It’s clear from the results that one major issue faced by special needs parents is that supermarkets do not offer a shopping cart which is safe and suitable for their child.

This means many are forced to shop online, arrange childcare or a second person, or struggle with a wheelchair alongside a shopping cart.

At Firefly, we want this to be a thing of the past by making sure #EverySupermarket provides at least one GoTo Shop cart.

You can help us to achieve our goal by taking our campaign leaflet and requesting a GoTo Shop at your local supermarket.

For more information on how you can get behind the GoTo Shop campaign, e-mail us at [email protected]

GoTo Shop – Good News!

We at Firefly, along with our amazing community, have been hard at work behind the GoTo Shop Campaign – and we have some fantastic updates we want to share with you.

For anyone not familiar with the GoTo Shop Campaign – let us catch you up!

The Firefly GoTo Shop Cart which has transformed shopping trips for special needs families in over 3,500 UK stores, is now available for distribution in the US, Europe, Australia and Canada.

As you will be well aware, we have a strong community at Firefly and parents are continuously sharing the challenges they face with everyday tasks, like grocery shopping.

The GoTo Shop has been designed to make shopping trips easier for parents and carers of young children with disabilities.

The shopping cart seat includes a secure and adjustable 5-point harness, adjustable head and lateral support, a soft padded seat and an open front for easy transfer.

Parents who have used the cart in the UK have commented on the social benefits of the face-to-face interaction they get with their child – and the smiles on the faces of the kids we get photos of never fail to brighten our day – it makes us realise how badly the GoTo Shop is needed!

Over the past few months we’ve also been working with two leading retailers in the USA and a one in Australia, trying to get the GoTo Shop into their stores. We’ve found that retailers are now asking for social proof.

This is why we need you to keep sharing and tagging your local stores on our Facebook page!

In recent weeks we have had some pretty exciting news for the campaign.

The GoTo Shop has made its way to Greece, France and Germany – which is pretty awesome right?

Not only that but our Firefly Friends in the UK can now request the GoTo Shop in another major retailer.

ALDI are now behind the GoTo Shop Campaign! Just go and ask for one at your local store.

There is still so much potential for this campaign, so we are calling on you our wonderful community to keep up the hard work with your campaigning.

If your local store doesn’t have a GoTo Shop download our leaflet here and bring it to your local store manager. Together we can make a difference!

Want to get involved in the campaign? Head here to find everything you will need.

Let us know your progress – we’re asking for your help, so you can bet we’ll be there to help you with your efforts!

If you require more information, assistance or if you want to let us know your progress feel free to contact Mark at [email protected]

UK Accessible Theme Parks

At Firefly, we know how difficult it can be for some Special Needs families to have a care-free family fun day.

Fortunately, across the UK, some theme parks are adapting to become more inclusive for all families, ensuring every child can have a fun day out.

Paultons Park

Paultons Park, and in particular, “Peppa Pig World”, was designed with disabled users in mind.

As such, the website claims this is why they don’t offer a discounted rate for carers.

The park, based in Ower, Hampshire does, however, offer free entry to guests who are wheelchair or motorised-scooter dependent.

Best of all – you can meet Peppa, George and more!

Accessible toilet and changing facilities are available and assistance dogs are welcome in the grounds.

The site also has a Queue Assist Policy, allowing priority access for guests who cannot queue in addition to wheelchair hire facilities, although these must be pre-booked.

If your child isn’t a Peppa fan there’s a 4-D cinema, stage shows, the dinosaur themed Lost Kingdom and much more – though it should be noted not all of these facilities will be appropriate for everyone.

One new feature, certain to delight everyone is Little Africa, where you can find meerkats, porcupines, lizards and more exciting creatures!

Gulliver’s Theme Parks

Gulliver’s Theme Parks have three different sites across England; Gulliver’s World in Warrington, Gulliver’s Land in Milton Keynes and Gulliver’s Kingdom in Matlock Bath.

One of the great boasts of these parks is their claim that queue times are always low due to the sheer scale of the parks.

This makes it ideal for guests who have difficulty waiting.

The parks still offer a, “Ride Access Pass”, for one guest and three other users. They are well versed in how helpful this can be to families, given the website’s declaration that 1 in 40 guests to the sites are on the autistic spectrum.

In addition, concessions are offered and there are online guides to help families navigate each location’s suitability.

Drayton Manor

In April 2007, a study from the National Autistic Society found that children with autism associate with Thomas the Tank Engine more than any other children’s character.

The study posited that the reason was the simplistic emotions on the faces of the characters.

In years since it’s been theorised that the crashing and smashing of the trains proves engaging, as well as the appeal of the organisational structure of trains.

No wonder parents of children with autism flock to Drayton Manor, which contains Thomas Land.

The park also offers an ‘Easier Access System’ and the service user can also be given a carer card which allows up to 4 carers up through the exits of your 10 chosen attractions.


The great thing about Flambards, located in Cornwall, is that they offer free access to wheelchairs throughout the park. However, these are limited so booking is advised.

In addition to this, a fully adjustable changing table is located in one of their four accessible toilets.

Assistant dogs are welcome, and reduced pricing is available for carers and service users.

Pay attention to the website to see what attractions are open on certain days.

NB: All attractions are open during the summer.

Alton Towers

Alton Towers, perhaps, has the most comprehensive accessibility policy of all the UK sites listed.

The guide itself can be found on their website and comes to a full 27 pages! It leads visitors through entering the theme park, ride safety, ear defenders and hearing loops, the first aid centre and everything in between.

There is a diagram dedicated to the restrictions of each ride.

The accommodation at Alton Towers has also been thoroughly thought out when it comes to special needs, including buttons to turn off the colour changing lights and sounds in the lift in CBeebies Land Hotel.

Chessington World of Adventure

Similar to Alton Towers, Chessington World of Adventure also have an Accessibility Guide, which can be found on their website.

This goes through each attraction in the park and lays out the accessibility features in bullet points.

One wristband holding ‘Adventurer’ can bring along between 1-3 carers to use the Ride Access Pass.

These companions can be interchanged throughout the day.

There is a Changing Places toilet in the Pirate’s Cove area of the resort and wheelchairs can be hired.

You can upload documents onto the website as proof to get your Access Pass before you attend.

Thorpe Park

Another UK park with a jam-packed Accessibility Guide is Thorpe Park, and once again, it can be found on their website.

There is a table of information for each area of the park and every amusement’s level of suitability, including the number of steps needed to access each ride.

If you book your tickets online you can still get your free carer’s access, however this is only upon presentation of documentation at the site.

The park also has a Changing Places toilet containing a hoist, adult changing bed, height adjustable sink, shower and toilet.

Legoland Windsor Resort

Legoland proudly claim their site to be designed with the needs of people with disabilities in mind.

As such, they don’t offer discount for attendees with special needs, however, their carer will get free entry upon presentation of documentation.

The website contains a guide for accessibility including lists of rides and their suitability.

A wheelchair pass can be downloaded to the necessary party’s smartphone for quick access to rides.

There are also some wheelchairs available on a first-come-first-served basis.

The resort also encourages any families who feel they may need additional support to contact them before visiting.

Cadbury World

General Manager of Cadbury World, Gerrard Baldwin, is quoted on the website referring to the accessibility of the park; “We strive to offer an inclusive experience for everybody and regularly carry out reviews and risk assessments to ensure the expected high standards are maintained.”

Like many of the other parks on this list, Cadbury World offer free entry to essential carers and adapted amusements and seating.

The Birmingham theme park also has extensive parking in addition to a Changing Places toilet.

Visually impaired visitors are offered touch and feel opportunities throughout the tour, and hearing impaired visitors can take advantage of BSL interpretation screens as well as subtitled videos.

Barry’s Amusements

Barry’s Amusements is one of the gems of Co. Antrim’s North Coast.

Recently, it has joined the list of the amusement parks to add a Changing Places toilet.

That includes the height adjustable adult sized changing bench with hoist, a privacy screen, non-slip flooring and of course an adequate, clean and safe changing space.

It also has an Additional Needs section on its website providing information on their Ride Access Pass for those with social interaction issues.

Sandcastle Waterpark

Sandcastle is the UK’s largest indoor waterpark, and their commitment to accessibility is literally award-winning.

With Changing Places facilities, free water accessible wheelchairs, large print leaflets and menus, braille, videos with subtitles and audio commentary everyone can feel included.

Not only that the waterpark has an autism-friendly quiet room, offers familiarisation visits and a downloadable guide explaining all the sights, sounds, smells, tastes and touches you might experience.

The park also includes a queue fast-track policy and quiet starts for the first hour of every day, and ear defenders.


*Whilst all parks listed are accessible or autism-friendly, we advise calling beforehand to make sure the park will be able to cater for your family’s individual needs.

US Accessible Theme Parks

At Firefly, we know how difficult it can be for some Special Needs families to have a care-free family fun day.

Fortunately, across America, some theme parks are adapting to become more inclusive for all families, ensuring every child can have a fun day out, and not be excluded.

Six Flags

Earlier this year Six Flags Great Adventure, in New Jersey, held a, “Sensory-Friendly Autism Day”.

Designated decompression areas included iPads and the lights and music were adjusted to create a friendlier environment.

Resources and presentations were given throughout the day and, in addition, specially-trained staff were on hand.

The event was ticket-only – even season pass holders had to pay in!

But the purpose of the special day was to educate, fund-raise and introduce families to highly-trained special education staff from the Gersh Academy.


Since 2016, Legoland Florida Resort in Winter Haven, FL has been quietly adapting to become more accessible to families of all shapes and sizes.

One such example is the ‘Hero Pass’.

Guests on the spectrum can get a ‘Blue Hero Pass’, at no additional cost, ensuring the child’s entire group can get accelerated access to some of the site’s most popular attractions.

Those with mobility difficulties can also obtain a ‘Hero Pass’ and everyone can access the extremely helpful guide online to inform them of the most suitable rides.

There are also guides to let parents and carers know what to expect, in terms of noise and lighting, for each ride.

The park even has quiet rooms with sensory toys, noise-cancelling headphones and, unsurprisingly, Lego building tables.

All newly-hired staff, or “Model Citizens” as they are called, are trained to be able to effectively interact with guests on the autistic spectrum and their families.

Throughout April (World Autism Month), Legoland even contribute a percentage of ticket sales to Autism Speaks, and light up certain areas of the resort in blue.

Edaville Family Theme Park

An April 2007 study from the National Autistic Society found that children with autism associate with,  “Thomas the Tank Engine”, more than any other children’s character.

The study posited that the reason was the simplistic emotions on the faces of the characters.

In years since it’s been theorised that the crashing and smashing of the trains proves engaging, as well as the appeal of the organisational structure of trains.

No wonder parents of children with autism flock to the Edaville Family Theme Park which includes, “Thomas Land”, as well as, “Dino Land”.

The Park teams up with local non-profits, schools and programs that help kids with autism to educate and encourage inclusivity.

The site also has a huge Autism weekend for families as well as a permanent quiet cart on one of their trains, as well as quiet rooms and areas for kids to, “run their wiggles out”.

Sesame Place

There was huge excitement in the autism community when Julia, the first Sesame Street resident with autism, arrived on the scene.

Perhaps even more exciting for families with children on the autism spectrum was that Sesame Place in Pennsylvania became the first theme park, worldwide, to be designated as a Certified Autism Centre.

Staff receive training in sensory awareness, motor skills, autism overview, program development, social skills, communication, environment, and emotional awareness.

Sesame Place has a Ride Accessibility Program, matching each guest to the requirements of each ride.

This can also include priority boarding and queuing, ‘virtually’, so they can enjoy other activities as they wait.

The park also provides noise-cancelling headphones as well as access to their quiet rooms.

Low sensory areas can be found around the park in addition to low sensory parade viewing areas and special meet and greets with Julia herself!


Dolly Parton has a long history of philanthropy, with her Imagination Library recently donating its 100 millionth book.

Dollywood, proudly claim their Calming Room, to be the first of its kind in the world.

The room, opened in the Pigeon Forge, TN park in 2016, includes weighted blankets, sensory toys used in therapy programs and softly glowing lights.

The website also includes a “walkthrough guide” helping guests to know what will happen on their visit.

Holiday World

Another location with a calming room is Holiday World in Santa Claus, Indiana.

The room includes beanbag and rocking chairs, a tent and adjustable lighting.

The room can be reserved for 30-minute sessions, ensuring families are left to themselves during their scheduled time.

Furthermore, Holiday World also hosts ‘Play Day’, an annual and exclusive occasion that lets children with difficulties, including those who are wheelchair-bound, enjoy the rides.

Proceeds from the event are donated to Easterseals.

Cedar Fair Entertainment Company

Each of the eleven parks owned by the Cedar Fair Entertainment Company include Ride Boarding Passes for those with issues with mobility or are on the Autism spectrum.

These parks include California’s Great America, Carowinds in Charlotte NC, Kings Island, Mason OH and, the original, Cedar Point in Sandusky, OH.

The parks can also arrange for their shows to provide ASL interpretation, if informed a week in advance.

Alternate entrances can also be provided.


Disneyland and Disney World provide a Disability Access Service Card. The DAS card allows those who are unable to queue to receive return times for rides.

Once the guest’s party finish a ride they can obtain another card, similar to how the FastPass service works.

Disney Parks have responded to criticism that abuse of the system was becoming difficult to control and readjusted the system.

Additional resources and information packs can also be provided.

Morgan’s Wonderland

While all the parks mentioned above have made leaps and bounds to become more inclusive, Morgan’s Wonderland is the only theme park specifically designed for children with special needs from the ground up.

In 2005, Gordon Hartman sold his businesses in order for him and his wife, Maggie to focus their time and efforts into The Gordon Hartman Family Foundation.

In 2010 they opened Morgan’s Wonderland, named for their daughter.

It offers free admission to guests with special needs and is entirely wheelchair-accessible.

Even the water park extension, Morgan’s Inspiration Island, offers heated water and waterproof wheelchairs and wristbands.

Next to the park you’ll find The Academy at Morgan’s Wonderland, a school for students with special needs that the Hartmans opened in August 2011 which helps students from 12 to 24 to reach their full individual potential.


*Whilst all parks listed are accessible or autism-friendly, we advise calling beforehand to make sure the park will be able to cater for your family’s individual needs.

Three Books that Helped us Become Better Parents

Too often, as parents we focus too much of making sure our children have all of their needs met and neglect our needs.

All parents of special needs children need to take time for themselves to address their own issues regarding our chidren’s needs.

Believe us, knowing how to deal with your own feelings and emotions goes a long way in helping your child address their own struggles.

Here are three books that helped us be better parents:

 ‘A Different Kind of Perfect: Writings by Parents on Raising a Child with Special Needs’

by Cindy Dowling

The writings collected here are grouped into chapters reflecting the progressive stages of many parents’ emotional journeys, starting with grief, denial, and anger and moving towards acceptance, empowerment, laughter, and even joy. Each chapter opens with an introduction by Neil Nicoll, a child and family psychologist who specializes in development disorders.

‘Expecting Adam: A Story of Birth, Rebirth, and Everyday Magic’

by Martha Beck

John and Martha were an ambitious American couple. With six Harvard degrees between them, and living in the refined atmosphere of the Harvard campus, the last thing they expected was to become parents to a Down’s Syndrome baby. This is their story.

‘My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities’

edited by Yantra Bertelli and Sarah Talbot

An assortment of authentic, shared experiences from parents at the fringes is a partial antidote to the stories that misrepresent, ridicule and objectify disabled kids and their parents.

Novels Feat. Special Needs Characters

“We are, as a species, addicted to story. Even when the body goes to sleep the mind stays up all night telling itself stories.”

(Jonathan Gottschall, The Storytelling Animal: How Stories Make us Human)

You can’t escape stories, they live everywhere.

We find them in books, TV shows, music, advertisements, jokes, anecdotes, love letters, emails, memories and places we haven’t looked yet.

Each new story, fictional or otherwise, can fill an empty space in our worldview with colour and detail or alter what existed there before.

Stories matter because all of us want to feel understood as individuals and as part of a community.

This certainly applies to the special needs community.

There’s nothing like a good book and a cozy spot at home to unwind during rare moments of downtime.

Have a glance at these three novels featuring special needs characters that we think everyone should read:

1. ‘The Memory Keeper’s Daughter’

by Kim Edward

David’s relationship with his wife, becomes rocky while their son must deal with their uneasy relationship and his own longing to know the sister he lost.

2. ‘Up High in the Trees’

by Kiara Brinkman

This book will make you cry.

Young Sebby Lane tragically loses his pregnant mother when she is hit by a car.
Already emotionally and sensory sensitive,Sebby’s father, Stephen, decides to take Sebby to their summer home, but there Stephen falls deeper into his mourning.

3. ‘Of Mice and Men’

by John Steinbeck

This classic story of two men—Lenny and George—one who has a child-like mentality but brute strength, the other who takes on the role as a father-figure to the other.

Success! Tesco have 1,350 GoTo Shop Trolley’s!

Thanks to our Firefly Community the GoTo Shop campaign is getting bigger and better!

Tesco first trialled the GoTo Shop in July 2015, here we are almost 3 years later and look how far we have come.

There are now 1,350 GoTo Shop trolleys in Tesco stores across the United Kingdom, find all store locations here.

This now takes us to a grand total of 3,500 GoTo Shop trolleys throughout the UK and Ireland – how incredible!

But we aren’t giving up just yet, there’s still lots of campaigning to do – our mission is to see a GoTo Shop trolley in every retail store around the world.

If you want to see a GoTo Shop in your local store, we need you to get involved and let your store know.

You can do this by simply downloading a campaign leaflet and handing it in to your local store manager.

Get involved, get campaigning and together we can make a difference.