Managing in-home services
Tay-Sachs, Sandhoff, GM1, Canavan and related diseases

In-home services provide skilled loving care for your child and much needed respite for you, but inviting strangers into your home has its own challenges. Here are few tips about how to create a positive and empowering working relationship with in-home care providers.

1. Set clear expectations and open communication

During the first visit discuss your expectations - for example "night nurses are expected to stay up all night." Agreeing on the expectations from the start will make handling any issues easier. Encourage the care provider to discuss any issues or concerns with you as they arise.

2. You are the world's leading expert on your child

Remember that you are the world's leading expert on your child. If the care provider does not respect that, consider asking the agency for a replacement.

3. Maintain a professional relationship

Many families develop close friendships with their care providers. It is important to remember they are not guests in your home; this is their job. You are not expected to offer coffee or clean for their visit.

4. It's OK to request a different provider

If you have any doubt, concerns, or simply don't click with the provider it is OK to request someone else.