There are many different types of community health services. Some resources may not apply to your situation because children with a chronic or complex illness can vary greatly in terms of their special needs. Over time, you will create your own list based on your child’s specific needs and the area where you live.
Not all services and interventions are covered by provincial health insurance or private insurance plans. It is important to access all financial resources that your child and family may be eligible to receive.
As a parent of a child with a chronic or complex health condition, you may qualify for financial support. This support can help cover the extraordinary costs associated with being a parent of a child with special needs. Financial support can come from federal tax breaks, provincial government services, and private programs. The amount of money you receive will depend on your child’s needs and your family’s financial situation.
When you complete an application, always mail the original and keep a copy for yourself. Pay attention to renewal dates for programs that must be re-applied for every year. If you miss a renewal date or hand an application in late, it may result in you losing your benefits. If you have any questions when completing an application, call the appropriate agency for information. Developing a relationship with a worker from each agency can be helpful when specific questions arise about your application or available services.
Multi-service agencies provide a broad range of programs and services geared at several areas of your child’s development. These agencies offer a full range of service including parent education and support. Most agencies accept referrals directly from parents for service with one exception: diagnostic or medical clinics. If you want these services, a medical referral is needed.
Communication resources (speech and language services)
Some children with complex health conditions may have difficulty with communication. There are services that work with your child in developing communication skills. These skills can include verbal language and alternative systems of communication such as American Sign Language or the Picture Exchange Communication System (PECS).
A speech-language pathologist (SLP) is a person specially trained to help people with speech and language problems. An SLP can assess your child’s needs and decide the type of program that is best suited for your child. The SLP can recommend specific ways to help your child develop communication skills. The use of alternative communication strategies can help both verbal and non-verbal children understand and use language.
Your school board may have a fairly long waiting list for speech and language services. When your child is in school, usually the help is given to your child’s teacher rather than directly to your child. Talk to your child’s teacher or school principal about speech and language services.
Some children and youth with special needs may engage in certain behaviours as a way of expressing to others how they feel or what they want. There are specific services that work with your child in developing skills and addressing behaviours.
Sensory and motor services
Many children with chronic or complex health conditions have problems with fine motor skills. These include writing, cutting with scissors, or fastening buttons. They may also have issues with gross motor skills. These include riding a bike, skipping, or jumping. Occupational therapists (OT) help with these kinds of problems.
Some children may also be more or less sensitive to certain sights, noises, tastes, smells, or textures/touches than others. OTs who are trained in “sensory integration” can help in this area.
Social and recreation services
There are services that work with your child in developing social skills, appropriate social interaction, and age-appropriate play skills. Finding recreational opportunities for a child with special health needs may require putting many pieces together including one-to-one support along with specialized camp experiences. Connecting with specialized organizations that offer services to children with special needs can help you develop a recreational plan that will allow your child to experience time away, in a recreational setting with peers.
Recreational programs and services for children with special needs include social groups, sports activities, summer camps, and life skills training. These services may be provided in a specialized setting. They may also be provided in an integrated program that includes children with and without special needs.
Make sure to complete your applications for summer camp programs as early as possible as the spaces fill up quickly. Also remember that your community’s parks and recreation department offers activities that may be helpful to your child.
Family support and respite services
There are programs that can help you and your family members manage the sometimes overwhelming job of parenting a child with a chronic or complex illness. You do not need to do this on your own. Other families and agencies are there to help. Parents may find themselves trying to balance the needs of their child with the needs of siblings, other family members, and household chores. Making contact with a respite agency will allow you to develop a respite plan that makes sense for your family.
There are child care services and school board services that can help your family choose the best daycare and educational options for your child. School services will depend on your child’s needs. Your child may need to take medication during the day, or may need an individual education plan.
It is important for you to work together with your child’s school throughout your child’s educational experience. Talk with your child’s school about what your child needs. You may also wish to write a letter to your child’s school, explaining your child’s strengths, limitations, and what to do in an emergency.
You may be asked to enrol your child in a research study. A lot of research is conducted to learn more about diseases that only happen in children, or that have a different course in children than in adults. Doctors, nurses, and other health professionals also study children’s mental and physical development in research that can ultimately benefit all children.
Whether to consent to allow your child to participate in a research study can be a difficult decision. Not only must you deal with your child having a serious illness, but you are also asked to make an additional decision about joining a study. There are advantages and disadvantages to enrolling your child in research, but your child will receive excellent care either way. Make sure that the staff in charge answer all your questions about the research study.