Enhanced In-Home Disability Supports (EIHDS) is a pilot project designed to support families of children with disabilities who are in crisis or at risk of being moved to a residential placement. Through the pilot, supports needs are identified and new and innovative ways to provide respite and support are tested. The project is helping families build confidence in caring for a child/youth living with disabilities. It is helping increase the quality of life for families to stay together.
Community Services’ Disability Support Program (DSP) serves Nova Scotians living with disabilities. The program strives to deliver supports that allow Nova Scotians living with disabilities to have more control over their lives and decisions, as well as supports that increase their social inclusion and quality of life. To help achieve this, DSP piloted the Enhanced In-Home Disability Supports Project (EIHDS) to address the unidentified, evolving, and potentially overlooked needs of families caring for and living with children or youth with disabilities. This is in recognition that supports should be made available not just for Nova Scotians living with disabilities, but also for the family members who support and care for them.
DSP conducted a consultation with relevant stakeholders and DSP at-risk families who care for a child or youth living with disabilities at their home to identify key gaps in services and challenges that would need to be addressed to avoid residential placement. Consultations revealed the following gaps/opportunities for improvement: holistic support planning for the family, finding and coordinating skilled respite support, lack of capacity and skills in caring for a child or youth with special needs, and financial support to help caring for a child with disability.
• Holistic or individualised support plan was identified as a key need by families. By having an individualised support plan, a family will be empowered to make decisions that best serve their needs and unique to their situation, with the support from the department.
• Respite support was seen as a key need, both in finding the right type needed as well as the coordination of it. Respite provides a break from care-giving responsibilities and allows family members to take care of their health and their needs. Nova Scotia’s respite navigation service was identified as needing improvements to meet the needs of these families.
• Lack of care-giving capacity and skills was identified as another need for these families. As needs change, so will the skills needed for the family members to meet them. Families struggle to navigate through the change without professional help and as a result, may suffer from caregiver burden and deteriorating mental health.
• Financial support was needed as the cost of caring for and treating children with special health care needs can be costly. When available, sources of financial supports can have limiting criteria for how funds should be allocated or used.
The pilot was designed to increase the department’s ability in meeting these identified needs. The implementation was done by prototyping solutions with participating families who have self-identified to be in crisis and urgent need for interventions. Based on the findings from the consultations, the project team developed and trialled four enhanced in-home supports and services (prototypes) to address the gaps.
Intensive Family Support Planning (IFSP)
This prototype involved care coordinators and service providers working more intensely with the family to develop and action a comprehensive and structured plan for the whole family. The goal was to improve care planning and matching of services to the child and family needs, by including families in decision making, goal setting and action planning and providing a wrap-around support system.
Outreach Supports (OS)
Aligned with the IFSP, this prototype activated diverse professional outreach teams to increase capacity and expertise to support for children with disabilities and their families in their homes. This included occupational therapists, behavioural interventionists, psychologists, and registered nurses. The goal was to build the family’s capacity in supporting their child, by working within the comfort and specificity of their home and routine to develop and implement recommendations.
Disability Needs Funding (DNF)
Aligned with the IFSP, this prototype provided access to additional funding to address areas related to the child’s disability needs. This may include food allowance, social activities including transportation, items for reward system, specialised interactive toys, or skilled respite providers. The goal was to reduce financial barriers, and improve physical environment and inclusion in community.
Agency Delivered Respite (ADR)
Aligned with the IFSP, this prototype provided funding to service providers in contract with the Department to coordinate and provide skilled respite services that best meet the needs of the families, both in and out of the home. The goal was to reduce the burden felt by families in finding and coordinating skilled respite services.
The EIHDS pilot project tested these enhanced supports and services for a 6-month period. This prototyping method has allowed the department to validate ideas and assumptions and adopt an agile approach in making improvements based on feedback from families, care coordinators and service providers.
What Makes Your Project Innovative?
Inclusive and human-centred design
The pilot was co-developed with families of children with disabilities. This process allowed first-hand understanding of priority issues faced by the families. As a result, four prototypes were trialled with families, staffs and service providers across the province.
Principles of a restorative approach
- IFSP was family-led, instead of staff-led, when determining goals and resources for families. It was holistic, collaborative, and solution focused.
- DNF honored the broader family’s needs, beyond items solely needed for the child’s disability. These include supports like counselling and social activities for all family members.
- OS sent professionals into the home to work with the entire family where it’s most convenient for them; instead of only with the child with disabilities.
- ADR provided skilled respite who implemented plans provided by OS professionals; hence removing the burden on families to find and coordinate skilled respite.
What is the current status of your innovation?
The EIHDS project concluded in Fall 2019 at which point a formal evaluation of the pilot results was completed. The evaluation results provide evidence that intensive, family-led planning and in-home supports should be considered as key elements of any future broader program for children with disabilities and their families.
Collaborations & Partnerships
A total of eight families and ten children agreed to participate in the project from across the province. In total, six care coordinators and seven service providers participated in the project. Early in the project, all stakeholders were key in identifying existing gaps in services and challenges. Once the prototypes were developed, they were trialled for a period of 26 weeks and feedback was provided throughout. This data provided critical lessons learned and enabled adaptations along the way.
Users, Stakeholders & Beneficiaries
Overall, the pilot brought positive impact for staffs, families and service providers involved.
• Families expressed a new sense of ability and confidence to handle their situations as a result of these services.
• Care coordinators who reported feeling more empowered to support families. It allowed them to extend beyond DCS programming and connect families with other government programs.
• Service providers reported that the pilot had helped improve their relationships with the department.
Results, Outcomes & Impacts
The evaluation focused on determining if and how successful the prototypes were in their implementation and their ability to help support families in caring for their child with disabilities at home. The approach to evaluation was intended to be adaptive to allow for learning throughout the project.
Results were qualitatively synthesized into broad themes and included insights gathered from families, the support team and project team. There was consensus that the prototypes were uniquely impactful in improving the family’s well-being.
- IFSP provided an inclusive space for collaboration and was key in families reaching their goals. The approach gave families a new sense of support and confidence in handling their situations.
- OS connected families to professional services in ways that built capacity in the family home.
- DNF reduced financial barriers and improved community inclusion, and
- ADR reduced the burden on families to find and coordinate skilled respite services.
Challenges and Failures
The on-boarding process for families and service providers was too accelerated. Prototyping was a new way of working for all stakeholders and it took more time than expected to find willing partners/collaborators, finalize service agreements and initiate services. This resulted in delayed supports to families. The pilot end date was extended to ensure all families received six months of services.
The transition from intensive services back to regular programming was challenging. There were concerns among families and the support team regarding the ability to maintain progress after the pilot ended. The approach to transition planning was based on best practice and gradual to allow time to adjust and ensure a smooth transition. Ultimately, families felt prepared to move forward through the transition process.
Conditions for Success
In serving families living with disabilities, Community Services needed to build a relationship with the Nova Scotians it serves through a human-centred and restorative approach.
• Collaborative approach that brings different teams and people together to work toward a shared vision.
• Empathetic approach that builds authentic connection and long-term relationships with the families served.
• Open-mindedness that enables the exercise of accountability and connection-building.
All these lead to full commitment and participation from all. Care coordinators are key in helping families reach their goals. Service providers are key in providing skilled services to support families. Families are key in helping the department shape its learning trajectory and scale up public impact. Additionally, prototyping was an iterative approach that allowed working collectively and inclusively toward a shared goal. This method addresses uncertainties as they arise, and adapts solutions along the way.
The project has different strengths to replicate into different types of public programs. For Community Services, EIHDS has lent a lot of new ways of thinking when it comes to designing new programs.
• Increased expertise and capacity both within the disability sector and the department in better serving people living with disabilities will help future DSP programs.
• Continued identification of changing needs for enhanced in-home support for families with a child with disabilities at home will produce new needs to be addressed.
• Agility in responding to identified needs by means of drawing from front-line staffs’ wealth of experience will equip the department to answer new needs as they arise.
• A variety of supports and services that address unique challenges faced by families of children with disabilities will increase the quality of life for Nova Scotians living with and affected by disabilities.
• A collaborative approach to service delivery builds trust and public legitimacy.
Key lessons learned from the EIHDS project, as synthesized from the evaluation include:
• Every child and family has unique needs. The child and family should be at the centre of program design and involved in goal setting discussions and activities.
• A collaborative approach that brings all perspectives together to work towards shared goals is critical. This allows teams to work creatively to provide timely access to wraparound supports.
• Dedicated resources are required to provide this level of intense case management.
• Family’s readiness to receive supports impacts the collaboration needed for Intensive Family Support Planning (IFSP). Varying life circumstances can affect this greatly.
• Investments in intensive enhanced in-home services that support a family to continue to care for their child with disabilities at home are more cost-effective than out-of-home placements.
• It takes time to build relationships, trust with children and their families, and buy-in to the process. Time to build those relationships between the child, family and support team should be accounted for in the length of time enhanced supports are made available.
• Transition planning out of intensive services back to regular programming must be considered very early on and implemented in order to prevent abrupt endings to intensive services. This will help families sustain progress achieved.
• Future program design should consider varying levels of support, flexibility to support life rhythms of the child and family, and ideally identify and support families before they hit a point of crisis.
Overall, the results indicated that the EIHDS pilot project was a success. All families felt the design and delivery of the project was effective and clear. Due to the effectiveness of enhanced in-home supports, most families would have liked the services to continue, based on their child’s improvement.
The successful results of this project provide evidence that intensive, family-led planning and in-home supports should be considered as key elements of any future broader program for children with disabilities and their families in Nova Scotia.
- Evaluation - understanding whether the innovative initiative has delivered what was needed
- Diffusing Lessons - using what was learnt to inform other projects and understanding how the innovation can be applied in other ways
8 February 2021