Gaps and barriers parents face

What has been done

Quick guides and resources

Inventory of practical information

• Parents of children with medical complexities have difficulty recruiting qualified personnel with experience.  Respite worker databanks are not specific to children who are medically complex. There are only a limited number of workers who are qualified and have experience with the medically fragile and technology dependent population.

• Working with children with medical complexity requires specialized training such as nursing; therefore, respite services are more costly.

• There is a high turn-over rate for Nurses, as well Personal Support Workers (PSWs) due to the entry level nature of the position. This makes it hard to retain consistent support.

• Training workers requires lots of investment because of all of the unique needs inherent to medically complex children (equipment, medication, record keeping, emergency protocols, etc.)

• Parents have difficulty trusting someone else to provide consistent and vigilant care for their child.

• Out of home respite facilities are unable to provide 1 on 1 support for 24 hours a day.

Caring for YOU, the Caregiver

The literature indicates a mix of qualitative/quantitative evaluations of various respite programs in the United Kingdom, Ireland, United States, and Canada with overall positive impacts of the respite programs on caregivers’ lives.  One study suggested administrators may address the gaps in service delivery by developing high quality training programs for the use of unregulated respite providers.

There are also the following initiatives:

Canada:

• A Nova Scotian partnership identified 4 priority recommendations for responsive respite care provision

• Canadian Healthcare Association reviewed respite care in Canada and gave recommendations for action

• Government of Manitoba:

  • Winnipeg Integrated Services

  • Integrated Children’s Service

  • Unified Referral and Intake System

  • Specialized Services for Children and Youth

• Saskatchewan Disability Strategy also gave relevant recommendations

United States:

• The National Consensus Framework for Systems of Care for Children and Youth with Special Health Care Needs Project includes guidelines and describes case studies across various states.

Alberta Children's Hospital (ACH) Tracheostomy and Ventilator Education Program

Available Resources in the Ottawa Area

Connected Care Program (Sick Kids)

Family-Managed Home Care