Advocating for Your Special Needs Child

If your child has special needs one of the most important things you will ever need to do is obtain an accurate diagnosis and follow up with appropriate health and social services. A parent's role as advocate for a child with a developmental delay such as autism or Down's syndrome is a lifelong one, and despite improvements to services offered it can still be an uphill battle to get the care your special needs child requires. Being prepared for any meetings or requests for services is a crucial first step in getting the best results for your child.

Being prepared means knowing what to expect from a given meeting, service or process. Be clear about why you are contacting a given professional or requesting a service. Whether it is a diagnostic procedure at the hospital or an IEP meeting to set your child's educational program at school, make it your business to know what you can and cannot expect, and go into the process knowing what will be expected of you. When you make an appointment, always ask key questions such as how long a procedure will take, who you will be seeing, what documentation to bring, and what the follow-up will be. Good preparation going into a meeting can measurably improve your experience and increase the likelihood your special needs child will receive prompt access to services.

Advocating for your special needs child: Stay positive

No matter how frustrating the process or how much red tape you find yourself going through, try to stay positive. This means keeping your immediate objective in mind at all times, and frequently comparing results with that goal. Don't be afraid to ask professionals to set a time frame for delivery of services or to break larger objectives into a series of more attainable objectives. Do hold service providers accountable is schedules and agreements are not respected, but remember to use clear non-judgemental language when you do so. If you find yourself becoming frustrated due to a lack of service or a conflict between your the interests of a service and those of your special needs child, it is best to request time out to regain your composure before continuing with the process. An angry outburst does little to speed up the process, but a positively phrased request that your child's rights be respected can sometimes create significant change in a strained situation.

Advocating for your special needs child: Get help

Most of the professionals and services you will need to access for your special needs child will offer some form of support to clients and their families. Even if you never expect to use these services, become familiar with them. In some cases a medical or mental health specialist, a social worker or a special educator will be your main point of contact and you will only be able to access services through this professional. There may also be a patients rights or users committee, an ombudsman or a number of professionals acting as occasional consultants. Be sure to keep a current list of support services available to your disabled child and your family, and know how to access the services should you ever need them.

Bringing in an outside advocate to support your family is also an important option when requesting or using services for a disabled child. In most medical and educational settings you have the right to be accompanied by a family member or friend, by another special needs parent who has been through the process before, or by a third party professional who will advocate for your family and help coordinate services. Don't be afraid to ask for this help! Our family has had positive results from bringing in a professional advocate as needed. This may seem like an extraordinary step to take, but a neutral third party can facilitate communication between home, school and your child's health and social services team. An individual with experience accessing services and advocating for the family can make a huge difference in what services your special needs child is offered, and how promptly. And it never hurts to feel a professional sees your family's point of view, and will be advocating for all of you!

Advocating for your special needs child: Follow up

No matter whether you are going through a diagnostic process or trying to access special education services for your child, always remember to follow up. Ask for written reports, call professionals to request updates, remember what results have been promised and contact the service within a reasonable time frame if results are not obtained. Unfortunately, most health and social services personnel and most educational facilities are overwhelmed with requests for special needs services. Budget cuts can result in staff reductions or sudden changes to established special needs programming. This often means one person provides services to a very large number of disabled children and adults.

The squeaky wheel does tend to get the grease, so parents of special needs children must be prepared to remind professionals about promised services, to ask about upcoming appointments or deadlines, or to follow up verbal requests with written confirmation. If the situation is particularly strained, parents may need to make use of existing grievance or review procedures. And when things are going well, a few words of thanks or encouragement also go a very long way towards ensuring a positive relationship with your special needs team.