Making a Plan

Ask an expert
When it comes to getting expert advice, you probably already know a professional who can help you get respite. Social workers, Community Care Access Centre managers, family support workers, Infant Development Workers, Integration Advisors and many others are familiar with the available resources and can help connect you with the right service provider. If you can, choose someone who is also familiar with you and your situation. Tell them about your need for respite and ask them to help. 

Together you will want to examine what services you are eligible for, and define your respite needs based on the daily needs of your entire family. You’ll need to know how to access emergency services, and be prepared to redefine and reorganize when there are changes.

Sometimes a team meeting may be helpful to determine where support will come from. Families need to plan their respite services, and should NEVER understate their needs from a misguided sense of “pride”.

How much Respite do I need ?
Use the chart below to determine how many total respite hours you may need each week to meet your own needs and those of your family. Respite hours must be planned and integrated into the family lifestyle on an ongoing basis.

INDIVIDUAL PERSONAL TIME:
This is time allocated for a real emotional and physical break from the care of your special needs child and from all other demands. For some, it may mean time to jog, read, or take a leisurely bath. For others, it could be working in the garden or having lunch with an old friend. This special time allows you to unwind from the many stresses in your life by focusing on some pleasurable activities. Many parents find that this personal time helps recharge their energies to meet future demands.

COUPLE TIME:
To ensure a strong relationship as companions and as parents, it is important that a couple find the time to be together to have fun, to share and to talk about the many parenting issues they are dealing with. For some parents, this could mean going for a short walk together in the evening, having a late dinner after the children are in bed, a date such as a movie etc. Many parents choose to separate their time together into two categories: time for discussion about household management and children and time for just having fun and enjoying each others company. This couple time will be an investment in your family and contribute greatly to your children's security.

TIME FOR SIBLINGS:
The brothers and sisters of your child with special needs require your attention. They may need you to attend their hockey games, play games, assist with homework etc. It is important that they know you have special time just for them to to talk and share their interests and concerns. The time you spend building a close relationship with your other children will help meet not only their needs, but your own as a loving parent. 

TIME FOR HOUSEHOLD CHORES/PERSONAL CARE:
Time must be set aside each week for groceries, going to the cleaners, washing windows, buying clothes, getting a haircut etc. Often, a parent takes on such tasks alone, while the other attends to the children. However, there will be times when the usual arrangements may not be possible. Respite hours will be needed to care for children with special needs so that parents may be free to take care of essential household chores. 

TIME FOR BEFORE / AFTER SCHOOL CARE OF THE SPECIAL NEEDS CHILD:
Many households today require two incomes in order to manager a reasonable family lifestyle. Many parents also benefit from continuing involvement in a fulfilling career. When both parents work, all children in the family will require child care- but it is often more difficult to find a good arrangement for a child with special needs. Parents must decided if they want their child care for at home or elsewhere and add the number of house needed for the total respite required for the week.

In-home Respite
Finding an in-home worker
Look at all potential sources, depending on your child's needs. For example, in Ottawa there is a Worker Bank which refers potential workers to families. Other sources for information and potential providers include private health agencies, churches, neighbours, neighbourhood high schools and other informal networks.

Family members as respite providers
Only in very rare circumstances are family members allowed to be paid through government programs in order to provide respite. This should be discussed with the funding agency prior to making arrangements.

Liability concerns
If the worker is hired through an agency, the agency accepts liability; otherwise the parents are liable should anything happen. Families are advised to inform their home insurance provider of the presence of a respite working/volunteer in the home. Careful screening of potential applicants and volunteers prior to hiring, with a through review of their qualifications and references is the best way to prevent problems.

If the respite worker is self-employed, he or she is responsible for obtaining adequate insurance to cover work-related injuries etc. Be sure to ask whether this has been done. Also, workers should consult with or inform their insurance providers if they are required to transport your child in their car.

Checklist: Interviewing and hiring an in-home worker

• Before interviewing, make a list of duties you require the worker to carry out. Your list may include items such as nursing, personal care, physical therapy or behaviour management treatment plans.
• Interview several workers to find one who best suits your needs.
• Explain your needs clearly to potential workers. For example, "I need someone to do orientation and mobility training with my child." or "I need someone to provide personal support and developmental programming every Saturday morning for three hours. Can you meet that time commitment?"
• Ask potential workers to describe themselves (e.g. creative, punctual, reliable, supportive, energetic, organized) and any interests (e.g. cooking, sports, music etc) that might be of benefit to your child.
• Ask about experience with particular procedures (e.g. G-tube feeding, behaviour management, medication administration, personal and attendant care, seizure activity).
• Look for creative and energetic workers. Ask the applicant about ideas for activities.
• Schedule part of the interview when your child will be there, and keep an eye on how the potential worker relates and interacts with him/her.
• Ask about availability at short notice for emergencies.
• Ask to see the applicant's resume and ask for names, addresses and phone numbers for references.
• Discuss the rate of pay and invoicing procedures with the worker you are going to hire.
• Define or describe your expectations of the worker and ask the worker to define his/her expectations of the position.
  

Out-of-home Respite

Checklist: Questions to ask before choosing an out-of-home respite facility

• What are the staff qualifications (including staff who provide nursing services)?
• What is the ratio of children to staff?
• What are the beliefs and values of the staff regarding children with disabilities?
• How does the staff approach discipline?
• What is the daily routine? What is the schedule for activities and programs?
• Are the staff awake through the night?
• Can parents drop in unannounced?
• What is the booking procedure?
• Will an individual plan be developed to meet my child's needs (e.g. medications)?
• What is the process of communication between parents and staff?
  

Questions and Answers
Q: What does respite mean to others and what does it mean to my family and I?
A: After reading through this web site and thinking about your own family's needs, you may have a better idea of what respite means to you and your family.
Remember: Each family member's needs are legitimate and there should be a way to balance those needs in order to reach an equitable arrangement.

Q: Do I need respite?
A: Every parent needs respite. If you are a parent of a child with special needs you don't have the opportunity for respite unless you use available respite resources. Parents of children with special needs often feel emotionally or physically exhausted, or both.

Q: Do I want respite?
A: Whether you want it or not, you need and deserve it.

Q: Will I like respite?
A: There are pros and cons to the different kinds of respite services available. At the very least, everyone needs an emergency plan. In order for this plan to be comfortable for you and your child, practice it. In the event of an emergency your child needs to be comfortable with other caregivers.

Q: Am I eligible for services or funding?
A: Yes. Eligibility criteria varies for both funding, and for in and out-of-home respite services. You can discuss your questions with the specific agency providing the funding or services.

Q: How long does it take for my application's) to be processed and when will I get an answer so I can actually get going on my respite plan?
A: This may vary from one agency to another. Most agencies usually give you the go-ahead with funding to support your plans within several weeks, but this could be a bit longer if they are really busy. If you have an emergency situation and are really desperate for help, SPEAK UP, and a response will, in most cases, be immediate. Some examples of emergency situations are hospitalization and extensive recovery times, parental illness, illness or unavailability of regular service provider, death in the family or illness of a close relative, elderly family members' care issues, and significant relationship changes.

Q: How do I find an in-home worker?
A: Look at all potential sources, depending on your child's needs. For example there is a "Worker Bank" which serves the Ottawa-Carleton region and refers potential workers to families to interview.

Q: Can I access funding if I have hired a family member (e.g. grandmother, aunt, uncle) to provide my in-home respite?
A: Only in very rare circumstances are family members allowed to be paid in order to provide respite. This should be discussed with the funding agency prior to making arrangements.

Q: What skills does the worker need to have to care for my child?
A: Make a list of duties you require the worker to carry out. These may include nursing, personal care, carrying out physical therapy or behavior management treatment plans, or stimulating and amusing your child.

Q: What are the liability concerns I should be aware of when hiring a worker or using out-of-home services?
A: Family caregivers are advised to inform their home insurance company of the presence of a respite worker/volunteer in their home. For workers hired through an agency, the latter accepts liability. If a worker is hired privately, parents accept liability. Carefully screening potential respite workers/volunteers and thoroughly reviewing their qualifications before they are hired best prevents liability issues.

If the respite worker is self-employed, he or she is responsible for obtaining adequate insurance to cover work-related injuries, etc. Be sure to check this. Also, workers should consult/inform their insurance companies if they are required to transport your child in their car.

Date postée 12 Fév 08 Printer-friendly Chart for Respite Calculations