Partnerships with disability professionals

When you combine your deep knowledge of your child with the expertise of professionals in the field of disability, you’re more likely to get a positive outcome for your child.

Ideally, your relationship with disability professionals is like any personal or business partnership, and is based on:

  • common goals
  • trust
  • shared power and responsibility
  • appreciation of what each partner brings to the relationship
  • respect.

In a partnership, you make decisions  together.

Partnerships don’t usually happen immediately but take time and a lot of open, two-way communication. They begin with the first meeting.

You’re an expert on your child, because you know him best. After all, you have a strong bond with him and an investment in his future. You probably also know more than you think about your child’s needs, because you know him as a ‘whole person’.

Communication: the key to a successful partnership

These tips can help you get the most out of working with professionals.

Make sure you understand

  • Ask any questions you have, even if the doctor or specialist seems rushed. If you need to know, you need to know. It can help to write down your questions before the meeting so you remember to ask them.
  • When you’re given information verbally, it can help to repeat it back to the professional to make sure you understand.
  • You don’t need to learn complicated professional jargon. Ask your professional to use language and terms that you’re comfortable with.
  • Avoid being pressured into agreeing to something if you feel uncertain. It’s OK to say that you need time to think things through before you respond.

Keep information

  • Keep notes about your meetings with professionals, so that you have accurate information for yourself and other family members, or to share with other professionals.
  • Ask for important decisions or other pieces of information to be formally noted in writing for you.

Share information

  • Be honest and share any concerns you have.
  • Share any information that you think will help the professional work more effectively with you and your child, including information about your family.
  • Give feedback about the relationship – positive reactions and constructive criticism are useful and important.
  • Discuss your own needs with the professional so they’re taken into account in decisions about what’s best for your child.

Be constructive

  • Try to see the situation from the professional’s perspective as well.
  • If you disagree with the professional, express your views and stick to the issue.
  • Keep calm, but also make sure you make your point.
Make sure professionals listen to you. You have a lot of information about your child that any professional dealing with you or your child should want to know. If a professional doesn’t pay attention to what you say, you might want to find an alternative.

Working with different disability professionals

If you’re working with different disability professionals from different organisations, it’s important to be organised.

Keep all forms, reports and documents in a folder, and have an exercise book for taking notes from phone calls or meetings.

Take your folder with you to appointments so that you have the information with you if you need to update a professional about how another professional is supporting your child. This helps you make sure that different disability professionals all understand your child and have the same goals for him.

Case managers
Some organisations offer lots of different services provided by different professionals. Ideally a case manager or family services coordinator (sometimes called a key worker or a primary worker) coordinates these services.

This person is your central point of contact for the organisations providing the services. A case manager is also an advocate for you and your child, helping you get the most out of the services you use.

If you move to another area, your case manager can help you make contact with services there, find out who’ll be seeing you, and possibly arrange to be part of a joint meeting with you and your new case manager.

Family service plans
Some services develop family service plans or individual program plans for children. These plans highlight goals, specific tasks and a timeline with review dates. The plans work best when they’re written in simple, clear language and when they take your family needs  into account.

It was the best feeling when the three or four professionals who were working with Miriam not only knew her and our family but also talked to each other and shared ideas. Things made so much more sense then – they just fitted together. The worst time was when there was no communication between the people who saw Miriam. Not only was I on total overload and given too many things to do with her, but sometimes the advice and recommendations just didn’t fit or actually conflicted with each other.

What if the professional leaves?

It’s always hard when you and a professional have worked to build a good relationship and then the professional moves.

Most services will ensure that your new worker is given background information about you and your child. But you’ll probably have to tell your story again. Think of this as an opportunity to educate the new worker about your child’s history and your family situation, and as a chance to highlight what you think is important.

You might regret the loss of the previous relationship, but sometimes a new professional can bring a fresh approach and new ideas to working with your child.