Each year, between 1,800 to 2,200 children in Canada are newly diagnosed with Cerebral Palsy (CP). While a formal diagnosis can provide some comfort to a child's loved ones - "at least we know what we're dealing with" - it is devastating to learn that your child has sustained a permanent brain injury.
Thankfully, families facing a CP diagnosis are not alone. There are numerous government programs, charitable organisations, support groups and other resources available to help parents learn about this group of disorders and assist in their child's development.
But where should parents begin?
In this blog post, drawing on my experiences as a parent raising a child with Cerebral Palsy, I've compiled a series of links to helpful resources parents can consult as they navigate a CP diagnosis.
What is Cerebral Palsy?
Cerebral Palsy is a group of conditions caused by damage to a developing brain that may affect movement and coordination, growth and development milestones, speech, and present other neurological symptoms.
While there are four main types of cerebral palsy, the particular constellation of symptoms will often vary from person to person. The injury to the brain that causes CP does not get better or worse; rather, particular symptoms might become more or less apparent depending on a child's stage of development and how they are managed with medications and other rehabilitative therapies.
Your child's treating physician will be best placed to explain the diagnosis, but it may take some time to identify the range and extent of disabilities through subsequent testing and consultation with specialists.
As such, while consulting general information about CP can be helpful and informative, you should be careful not to assume your child's CP will encompass all the symptoms mentioned, nor that other parents of children with CP will have experiences that mirror your own. Rather than focussing on best or worst case scenarios, treat this general information as a way to gain background knowledge on CP that may or may not be applicable to you and your child's doctors assess their unique situation.
General Resource Guides for Parents.
Many resource guides are available for parents, guardians and loved ones who are learning about CP after their child's diagnosis.
Now in its third edition, Cerebral Palsy: A Complete Guide For Caregiving, by Freeman Miller and Steven J. Bachrach, provides valuable advice for loved ones of a child with CP by authoritative experts. The updated edition includes extensive revisions that take into account the latest medical thinking, including advances in diagnosis, treatment, and terminology.
The Cerebral Palsy Research Network (CPRN) is a multi-disciplinary collaborative established to develop a North American clinical registry for quality initiatives and outcomes research in cerebral palsy. CPRN offers two free resources, The Cerebral Palsy Toolkit (Preview) and The Wellbeing for Parents and Caregivers Guide Book, that provide general information and suggestions for self-care for caregivers. These guides are a good place to begin your journey before you search for local or more specialised resources.
The Cerebral Palsy Info Packet by Support For Our Families offers a collection of resources covering diagnosis, strategies for home and school, and suggestions for working with professionals.
Finally, CanChild's Adolescent Study of Quality of Life, Mobility and Exercise (ASQME) Study asked parents of children with CP to reflect on what they had learned about the condition as they raised their child. They produced two resources which offer parents of newly diagnosed children some suggestions on what other parents have learned over time ("If I knew then what I know now" ... Parents' Reflections on Raising Children with Cerebral Palsy) and general suggestions for handling certain situations ("Parent to Parent"). CanChild has produced many other resources you may find useful over time. They can be found here.
National, Provincial and Local Resources.
Once you're equipped with some background knowledge, you may want to contact organisations and treatment centres near you. The Ontario Federation for Cerebral Palsy has developed a Resources Across My Province web page that contains links to Ontario-based resources for healthcare, funding, employment and income, legal and estate planning, housing and other helpful links.
The Cerebral Palsy Canada Network has also created a helpful list of provincial and national resources in one convenient location.
Associations, organisations, and programmes listed on these websites may not all be CP-specific, but connecting with the wider disability community can be important as you learn about your child's particular needs. It also creates opportunities for social interaction with other families in similar situations.
Community Supports.
In the CP community, there is unity in diversity and an understanding that everyone's experience with the condition will be different. Making contact with groups dedicated to particular disabilities associated with CP may be helpful as you investigate assisted ability devices, therapies and programming.
Some organizations to consider include:
- Communication Disabilities Access Canada - for people with disabilities affecting communication
- The Canadian National Institute for the Blind and Vision Loss Rehabilitation Canada Services - for people with disabilities affecting vision
- Community Living Ontario - for people with intellectual disabilities
- Epilepsy Ontario - for people with epilepsy/seizures
- Canadian Hearing Services and the Canadian Hard of Hearing Association - for people with hearing loss
- Autism Ontario and Autism Canada - for people with autism spectrum disorder
Government Resources and Charitable Funding.
Federal and provincial governments have created a variety of programs for people with disabilities. Eligibility varies based on program requirements, but it is well worth your time to explore what services and/or financial assistance is available to you and your child.
The Ontario government offers a significant number of programs for families of children with special needs, while the federal government provides a child disability tax benefit and matching funds child disability savings grant. The Benefits Wayfinder is an excellent tool to help you determine what benefits you may qualify for.
Some notable charitable programs and funding sources include:
- Ceridian Cares/Dayforce (assistive devices, camps, therapies, home modifications, grants for other living expenses)
- Smile Canada Support Services (financial assistance programs focussed on racialized children and immigrant communities)
- Jennifer Ashleigh Children's Charity (support for hospital-related costs such as not covered by OHIP)
- Noah's Clubhouse ($500 grant for therapy)
- March of Dimes (assistive devices, vehicle modifications, home modifications)
- Easter Seals (assistive devices, camps, vehicle modifications)
- Ontario Federation for Cerebral Palsy (assistive devices, camps, recreational activity programming)
- Hope Haven Therapeutic Riding Centre (equestrian programs for all abilities)
- ParaSport Ontario (accessible sports teams and clubs)
Legal Services.
As you and your child navigate life with a disability, you may encounter issues that require legal advice or representation.
Legal Aid Ontario provides people with lower incomes legal assistance for a wide variety of matters. If the matter concerns accessibility or human rights issues for persons with disabilities, ARCH Disability Law Centre and the Ontario Human Rights Tribunal can provide legal advice or legal remedies. ARCH Disability Law Centre also provides legal advice regarding guardianship, decision-making, and supported-decision making.
In some cases, a negligent action, medical malpractice or inaction by a medical provider may have caused or contributed to a baby suffering a birth injury, that then resulted in a CP diagnosis. In instances where a medical provider is known or suspected to have made such an error, you may be able to make a claim for compensation and damages through a birth injury lawsuit.
Gluckstein Lawyers' birth injury lawyers have assisted many families who are seeking justice for harm done to their loved one. We provide a free, no obligation initial consultation to answer questions you may have and outline your various options.
If we believe we can help you access compensation for your child, we would be honoured to become your tireless advocate and trusted legal representative for these matters. By working on a contingency basis for birth injury cases, we will only receive legal fees if we are successful in negotiating a settlement for you or winning a judgement in your favour at trial.
Support When You Need It Most.
Learning that your loved one has sustained a permanent disability from a birth injury is a life altering moment. While the road ahead may not always be easy, it is comforting to know that you don't have to travel it alone.
The Cerebral Palsy community and the wider disability community offers a welcoming and affirming network you can draw on for support. Whether it's consulting general information guides as you learn about the condition, or accessing programming, funding, or establishing individualized supports, there are many people out there who want to help you help your child to live their best possible life.
The content of this article is intended to provide a general guide to the subject matter. Specialist advice should be sought about your specific circumstances.