Finding out your child has cerebral palsy can be the beginning of a difficult journey.
Hopefully our previous article on the next steps after a diagnosis has provided a starting point from which you can find ways to put yourself, your child and your family on the road to a bright future.
In this article, we’ll outline some details on how and where to find resources and support that could prove invaluable throughout your child’s life.
Why it’s important to act early
Having worked with many parents who have children with cerebral palsy, we’ve found that early intervention is key for positive outcomes. Whether or not you’ve received a diagnosis, if you’re worried about your child’s development, seek help as soon as you can.
Talk to your family GP or paediatrician in the first instance and obtain detailed information about your child’s condition. Going forward, you’ll also need to arrange the appropriate assessments from as many specialists as are required (some parents have found this to range from 10-20 medical professionals).
Unfortunately, in some instances, it can take six months to a year – and a lot of persistence on your side – to finalise a proper Education, Health and Care (EHC) plan for your child. But, getting these things in place early can be a crucial gateway to ensuring the right level of support as your child gets older.
Potential roadblocks you may encounter
Parents can have a tough time navigating the various health, education and social care systems that they need to approach as part of caring for a child with cerebral palsy. In fact, it can take an immense amount of time, effort and persistence to secure the right level of help for your child.
You’ll need to curate a list of medical professionals, therapists, carers and support workers – a list that can change in both volume and specifications throughout your child’s life – and be the coordinating force that makes sure your child is seen at the right time by the right people. Added to that is the time and effort it takes to get an appointment, acquire reports after an appointment and getting prepared enough to ask the right questions at every stage.
All this can be a massive undertaking, which is where specialist (and personal) support networks and easy-to-access resources can come in so handy.
One of the first ports of call we’d recommend are the guidelines created by the National Institute for Clinical Excellence (NICE). These guidelines set out a protocol of sorts for the diagnosis, assessment and management of cerebral palsy in children between the ages of 0-25.
The text is quite long and technical, and not all of the information will apply to your child’s specific circumstances. However, it can be helpful to use as a yardstick to measure the quality of care you’re receiving. With the guidelines in hand, you can also be more aware of what you have the right to ask for in terms of best practice and referrals.
How to access your Local Offer and other regional support
The Local Offer is a dedicated scheme for all children and young people under the age of 25 who need SEND (special educational needs and disability) services.
You can find your Local Offer online through the website of your local authority (just search “Local Offer” in their search bar), or go straight to the new, dedicated Local Offer website. Among other features, the site has a tool to find relevant and local support agencies and organisations. These include special needs playgroups, adventure playgrounds, sports and educational groups and holiday support.
You can also use The Local Offer to arrange an assessment for the EHC plan we mentioned above. It’s a crucial plan that can provide additional support and provisions for children who need it most. Make sure you get supporting opinions from everyone involved in your child’s welfare. This includes social workers, health professionals, therapists (such as occupational therapy, speech and language therapy and physiotherapy) and your child’s school or nursery.
Where to find organisations specific to children with cerebral palsy
We should stress that you needn’t necessarily focus only on charities and organisations that deal specifically with cerebral palsy. If you’re looking for help with a particular issue – such as sleeping, or visual disorders – seeking an activity-specific organisation, rather than a diagnosis-specific organisation, could be more appropriate.
That said, there are several organisations that focus on children with cerebral palsy. Ourselves, Pace, are one of them, and we provide education, therapy and support for children aged 0-18 who have cerebral palsy, sensory motor disorders or development delay.
Another charity that deals with disability is Scope. Scope is a national organisation that we regard as pan-disability as they now cater to all forms of disability (although they did start off specialising in cerebral palsy). They offer a cerebral palsy advice line headed by Specialist Informational Officer Richard Luke who can provide generic information and signpost you towards support groups.
You can also look for early years groups in your local area as well as conductive education centres for rehabilitative services.
Other useful resources for cerebral palsy in children
Below are further useful resources and organisations you can approach as you look to support your child:
- Caudwell Children: This is a charity that can offer funding for specific needs and can be helpful if you’re struggling financially.
- IPSEA for SEND and legal advice: The Independent Parental Special Education Advice organisation are a free legal advice service that specialises in advising families on their legal rights when applying for the Special Education Needs and Disability provision.
- Bolt Burdon Kemp for compensation: If you’ve found – or suspect – that medical negligence caused your child to have cerebral palsy, you may wish to pursue a legal claim for compensation to provide for your child’s future and lifelong needs. Bolt Burdon Kemp has IPSEA-qualified SEN advisers who can help you figure out the legalities while their specialist cerebral palsy solicitors can work with you to make a claim on your child’s behalf.
- My Cerebral Palsy Child.org: This is a blog-style resource providing online support and guidance for parents of children with cerebral palsy.
- CP Teens UK.org: Created by and for teenagers with cerebral palsy, this is a self-help group that also organises social events, workshops and recreational activities.
- Enabling Potential report by Action CP: A report to a 2014 parliamentary enquiry on cerebral palsy, containing quotes and testimonials from the parents and families of children with cerebral palsy.
- Contact: The charity for families with disabled children. They support families with the best possible guidance and information. They also help to bring families together to support each other.
We believe it’s the responsibility of all agencies – whether that’s health, education, social care, charity or research – to work together to better support families of children with cerebral palsy. But, while we work to make that happen, parents will need to work hard to get the right mechanisms in place to support their child.
With our resources and information above, we hope we’ve made it easier for you to find and engage with the right support networks, specialist organisations and medical professionals needed for your child’s continued wellbeing.
By Lindsay Hardy, Director of Clinical Services at Pace & Amanda Richardson, current CEO of Action Cerebral Palsy, and former Chief Executive at Pace