Working with Outside Caregivers
Some children with special needs require caregivers to visit their home.
Some of 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 managed by an agency or organization, such
as private duty nursing or Early Intervention home visiting programs. Other services
are self-managed, 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
meet applicants, ask questions, and have final approval of any home-based caregiver.
You can also consider whether the input of other family members will be useful or
needed in choosing the best caregiver.
Family Rights
Families should expect the caregiver's provider agency to do the
following:
- Recognize that you, the parent, make the decisions in the home
- Provide fully qualified and trained personnel that are a good fit for the job, including proof of background checks and references from previous employers
- Follow through on arrangements or substitute staff when the regular caregiver is unavailable
- Replace a caregiver who is not providing appropriate care for your child
- Set up meetings between the agency supervisor, home care staff, and parent/family/child to discuss and solve any problems
- Maintain ongoing communication
Communication is Key
To have 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 start, it is important to 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 about acceptable behavior, such as:
- 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. Post important rules on a board for the caregiver to
see.
Finally, talk with other families who have in-home care providers and
learn from their experiences and suggestions.
- What sorts of guidelines have they set up 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
agreement 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 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 of services to be provided, and about the agency that employs your child's caregiver.
- Be open and honest about what you expect 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.
Resources
Information & Support
For Parents and Patients
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.
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: March 2020
Current Authors and Reviewers:
Author: | Gina Pola-Money |
Reviewer: | Tina Persels |
Authoring history
2013: first version: Tina PerselsR; Shena McAuliffe, MFAR |
AAuthor;
CAContributing Author;
SASenior Author;
RReviewer