Home > For Parents & Families > Caring for Children with Chronic Conditions > Managing and Coordinating Care > Working with Caregivers in Your Home

Working with Caregivers in Your Home

Some special needs children may require care providers to visit your home. Among the different types of in-home caregivers are:
  • Nurses;
  • Nurse aides or technicians;
  • Personal attendants or assistants;
  • Therapists;
  • Teachers; and
  • Respite care providers or sitters.
Getting one or more of these home-based services depends upon factors such as:
  • Your child's diagnosis or disability;
  • Age;
  • Program eligibility or availability (waiting list);
  • Funding source; and
  • State rules and regulations.
You, the parent or guardian, should be able to interview and have final approval of any home-based caregiver for your child. You should also decide if your child or other family members should participate in the interview.

Family Rights

Families should expect the caregiver's provider agency to do the following:
  • Recognize you, the parent, as the principal authority for decisions in the home.
  • Provide fully qualified and trained personnel suitable to the job, including proof of background checks and references from previous employers.
  • Follow through on agreed-upon arrangements or substitute staff when the regular caregiver is unavailable.
  • Replace a caregiver who is not providing appropriate care for your child.
  • Arrange for meetings with the agency supervisor, home care staff, and parent/family/child to review and resolve any problems.
  • Maintain ongoing communication as agreed upon to discuss services and plan for future needs or changes.

Communication is Key

In order to maintain a positive relationship with your child's caregiver and their agency, keep communication open, honest and respectful. Be clear and specific about your child's needs, writing down any agreements. If appropriate, have a conversation with your child and the caregiver about what activities or situations may be decided by the child and which ones are not negotiable.
Be clear from the beginning about any household rules, like "no smoking," but make sure your rules are reasonable. Can you accommodate a caregiver who smokes outdoors during breaks with an outdoor ashcan, for instance?
Finally, talk with other families who have home care providers and learn from their experiences and suggestions.

Family Responsibilities

Families have a responsibility to uphold their end of the home care bargain and act respectfully toward caregivers. Examples:
  • Always make sure the caregiver knows where you are, how to reach you, when you're returning home, and what to do in an emergency.
  • You, not the caregiver, are responsible for all other children or family members in the household.
It is natural to feel nervous or unsure about having someone you may not know come into your home to provide care or other services for your child with special needs.
To help you get a good start in your relationship with your child's home-based caregiver, here are some steps to take before services begin:
  • Learn as much as you can about the scope or description of services to be provided, and about the agency that employs the person who will be your child's caregiver.
  • Be open and honest about your expectations and discuss them with the agency management. Find out what the agency expects of you.
  • Ask about your rights and options in case you are not satisfied with the care or services your child receives. You may want to ask the service agency for a different caregiver or switch agencies altogether.

Resources

Information & Support

For Professionals

National Association for Home Care
Provides current news about homecare-related legislation; also includes a homecare agency locator. 202-547-7424

For Parents and Patients

American Association for Homecare
Find out about different types of homecare available, who offers it and how to choose what's right for you. 703-836-6263

Pacer Center
A parent advocacy site covering a wide variety of topics including education; community support; training for parents; and teen transition to employment for special needs kids.

Family Caregiver Alliance
Provides information, education, services, research, and advocacy to support family caregivers.

Empowering Caregivers
Provides newsletters, message boards, and articles for family caregivers.

Caregiver Media Group
Site includes "Today's Caregiver" magazine, conference information, newsletters, discussion lists, chat room, and more.

Authors

Author: Gina Pola-Money, 6/2008
Reviewing Author: Alfred Romeo RN, PhD, 8/2008
Content Last Updated: 8/2008