Working with Outside Caregivers

Some special needs children require care providers to visit their home. Among the different types of in-home caregivers are:
  • Nurses
  • Nurse aides or technicians
  • Personal attendants or assistants
  • Therapists
  • Teachers
  • Respite care providers or sitters
Many in-home care services are covered by insurance, Medicaid or by publicly funded early intervention programs. Eligibility for home-based services depends upon factors such as your child's diagnosis or disability, your child’s age, program eligibility or availability (some programs have a waiting list), funding sources, and state rules and regulations.
Home-based services are usually administered by an agency or organization, such as Private Duty Nursing or Early Intervention home visiting programs, but some services are self-administered, which means the parent/caregiver, or youth with a disability and their representative/guardian can hire, train, and supervise employees who will provide direct services. Sometimes these employees are paid for by a state or federally funded organization.
The parent or guardian, and the child if appropriate, should be able to interview applicants and have final approval of any home-based caregiver. You can also consider whether the input of other family members will be useful or necessary in choosing the best caregiver.

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 meetings between 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

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.
From the beginning, it is important t be clear and specific about any household rules, making sure they are reasonable and understood. For example, the caregiver should be awake and alert, first and foremost caring for the child. The caregiver may have questions: Can the nurse heat his lunch in your microwave? How do you feel about the respite worker being on the phone while caring for your child? Whatever rules you decide to make for your household are important to you and should be communicated. If there are critical things you want the caregiver to remember, post written guidelines on the wall for him or her to see.
Finally, talk with other families who have home care providers and learn from their experiences and suggestions. What sorts of guidelines have they established for their child’s caregivers. What has been a challenge? What have they found to be the most important quality in their child’s caregivers?

Family Responsibilities

Families have a responsibility to uphold their end of the home care bargain and act respectfully toward caregivers. For example, make sure that the caregiver always knows where you are, how to reach you, when you're returning home, and what to do in an emergency. It’s also important to remember that you, and not the caregiver, are responsible for all other children or family members in the household. The caregiver is only to be expected to perform tasks related to the child they are hired to care for.
It’s 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. With clear guidelines and open communication, you can begin to build a respectful and mutually beneficial relationship. To help you get a good start 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. In some circumstances, you may want to ask the service agency for a different caregiver or research new agencies and switch altogether, but this will be easier to navigate if you learn about the options before it becomes an issue.


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
Champions for Children with Disabilities, PACER Center is a parent advocacy site covering a wide variety of topics for special needs kids including education, community support, training for parents, bullying prevention, financial planning, and teen transition to employment.

Family Caregiver Alliance
Here, you'll find information about support groups, education, and advocacy news for family caregivers. A navigator helps locate state-specific services.

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 & Reviewers

Initial publication: June 2008; last update/revision: August 2015
Current Authors and Reviewers:
Author: Gina Pola-Money
Reviewers: Tina Persels
Shena McAuliffe, MFA
Alfred N. Romeo, RN, PhD