September 22, 2021
Hon. John Nilson
Room 361, Legislative Building
Regina, SK
S4S 0B3

Dear Honorable John Nilson,

On behalf of the parents of children with complex medical needs, we would like to thank you for arranging a meeting between our group and Sask. Health officials on June 15, 2005. The meeting was well attended and our group was able to present our requests in more detail. Unfortunately it was more of a straight presentation rather than a discussion of the issues as we had hoped. We were sent a formal written response from Roger Carriere on June 23 with which we were also disappointed. We are writing to you today to help us resolve our issues.
We have three main issues which were stated in our letter to you dated May 2, 2005. Our response from Roger Carriere on June 23 was quite vague in most areas, so we are asking you again for decisive resolution to these three issues:

1. That a minimum number of home care hours would be provided to complex medical needs children with level 4-5 care. These minimum hours would be 7 nights/week (8 hours/night), plus 8 hours per week for respite.
· Current Home Care policy is adequate in that it provides 7 nights care to children requiring ventilation, but it is inadequate in that it only permits 5 nights per week for children who are tracheostomied but not ventilated.
· Current Home Care policy MUST be changed to better address the needs of families and caregivers caring for children with breathing restrictions. As families and caregivers of children with tracheostomies, we are finding that the current policy needs to change to include children with tracheostomies, because the care needs of our children are identical to those children on ventilation. The level of care our tracheostomied children require at night is far beyond what is manageable for family members to function properly the next day. Between suctioning, oximeter or ventilator alarms, and changing tube feedings, these children can need attention anywhere between 10 and100 times per night. The constant care directly affects the whole family because parents and frequently awakened siblings are exhausted the next day. Families who are affected by the current policy having only 5 nights per week coverage dread the weekend because they know how tiring and frustrating it is to wake up so frequently through the night. In addition to the lost hours of sleep, family members lose a significant portion of family time throughout the weekend because they need to catch up on lost sleep. Living with five nights care per week has a significant impact on a holistic family life. Seven nights of home care coverage for families of children with tracheostomies should not be treated as an exception to current policy as we’ve been told, it should be the policy! As Canadian citizens in Saskatchewan, we shouldn’t have to fight for a reasonable level of care and safety for our families. We need to see the policy changed to meet our real world needs.

2. Standardization regarding quality and continuity of Home Care providers for complex medical needs children.
· We had asked for the discontinuation of Home Health Aides in the care of children with complex medical needs due to their lack of medical education. We have informally learned that Home Care is unable to change this policy because of the possibility of complex medical needs children in rural Saskatchewan where the availability of nurses is far less than in urban centers. We understand this problem and are willing to accept the Home Health Aides as care practitioners with one condition:
Specific Pediatric training
Currently, Home Health Aides only need a Grade 10 education to complete the Home Health Aide course through SIAST. To begin working for Home Care in the Pediatric program, a short orientation to Home Care policies is given, then hands on training begins with each child in a “buddy” system with another Home Health Aide. After a couple buddy shifts and some daytime hours, an RN signs Delegation of Task forms for the Home Health Aide, and this new person is then caring for the child. The problem with this current system is that Home Health Aides are performing medical tasks with these children without really understanding why it is done, or why it is dangerous to do things another way. There needs to be a formal training session for all new Home Health Aides working in the pediatric program covering issues such as anatomy, physiology, caring for pediatric tracheostomies, caring for G-tube and/or J-tube feedings, and basic oximetry and ventilator readings. With this core knowledge, the staff will have the ability to make better assessments of the children, and can apply this basic knowledge to all the children they care for.
We request that a term position in Home Care be created for someone to create a Pediatric Training Module, then provide training for all current Home Health Aides. Staff will provide much better care and make much better decisions if they understand the why behind the task.

3. Standardization for supplies and equipment coverage
· In Roger Carriere’s letter dated June 23, 2005, he stated that our request for coverage for oxygen saturation monitors and tracheostomy supplies would be forwarded to Brad Havervold, Director of SAIL. To date, we have not heard an update of coverage for the above items. Programs exist for every other “ostomy” but tracheostomies. There are many supplies required in the care of a tracheostomy and they are very costly for families. There is no reason that these supplies should not be covered, when supplies for tube fed children and paraplegic children can be covered. Oxygen saturation monitors are an absolute necessity for these children and are as important to their care as humidity and suction machines. They also must become a mandatory item provided by SAIL.
In closing, the above concerns are critical to the well-being of our families and the safety of our complex medical needs children. It is irresponsible of this government to invest money into the health care system to save infant’s and children’s lives with new and better technology without the appropriate post-acute care supports for the families of these children. These children likely would not have lived through their afflictions 15 years ago - it is time to match outdated policies with the current technological times.

The following is a summary of our requests:
1. That a minimum number of home care hours would be provided to complex medical needs children with level 4-5 care. These minimum hours would be 7 nights/week (8 hours/night), plus 8 hours per week for respite.
2. Create a term position in Home Care for the creation of a Pediatric Training Module to be delivered to all current and new Home Health Aides in the Pediatric department of Home Care.
3. Standardization for equipment and supplies, namely, full coverage for oxygen saturation monitors and all tracheostomy supplies.

Thank you for your time, we look forward to your response.
Sincerely,

Parents of Complex Medical Needs Children:
Melanie and Dan Kohlruss (Parents of Ethan)
Terry and Chris Burgess (Parents of Khyra)
Lisa and Ross Scott (Parents of Savannah)
Bill and Rena McIntosh (Foster parents of Amy)
Robbie Curtis (Parent of Cassie)
Jacque and Thom Tisher (Foster parents of Tysen)

cc: Hon. Joanne Crofford, Minister Responsible for Disability Issues
Don McMorris, Health Critic, Sask. Party
Ted Merriman, Disability Issues Critic, Sask. Party
John Brand, Sask Children’s Advocate Office
Roger Carriere, Community Care
Dawn McNeil, Home Care
Terry Blackmore, Community Care
Dr. Essalah, Pediatrician
Dr. Ruthnum, Pediatrician
Gerald Regnitter, Green Party of Saskatchewan
Mark Wartman, M.L.A.
Sandra Morin, M.L.A.
Ron Harper, M.L.A.
Kevin Yates, M.L.A.
Lyle Stewart, M.L.A.
Hope’s Home