The experiences of families of children with cerebral palsy and complex disability after three years accessing the National Disability Insurance Scheme.

INTRODUCTION: In Australia, children with cerebral palsy and complex disability receive funded supports through the National Disability Insurance Scheme (NDIS). This individualised funding scheme requires parents to navigate and advocate on behalf of their child, supported by expert reports, recommendations, and allied health services. Supports aim to enable participation in all areas of daily life, which may be otherwise largely inaccessible to children with complex disability and their families. This study aimed to explore the experiences of families of children with complex disability after 3 years accessing the NDIS. METHODS: A qualitative research design with a demographic questionnaire and in-depth interview was undertaken. Purposive sampling was used to recruit participants from one organisation providing occupational therapy and other allied health services. Data analysis implemented Braun and Clarke's thematic approach to examine the experiences of participants. CONSUMER AND COMMUNITY INVOLVEMENT: This research was conducted with a registered National Disability Insurance Scheme provider to give voice to parent consumers who raise children with complex disability. FINDINGS: Seven mothers and one father (N = 8) of children with complex disability were interviewed. Most parents reported increased success and satisfaction navigating the scheme. Five overall themes were generated from the data: pivotal roles of families, parental empowerment, life-changing equipment, the fallibility of the scheme, and a critical scheme. CONCLUSION: Parents reported reliance on the scheme for their child's basic daily care and a more enriched life for their child and family. Parents were grateful for the scheme but experienced inconsistencies, navigation difficulties, and variable choice and control. Most parents had fears about the sustainability of the scheme, translating into uncertainty about their child's future. Allied health professionals, including occupational therapists, are key advocates for children with complex disability and their families. Collaboration through sharing knowledge and skills to support children, their families, and carers is key to empowering parents to navigate the NDIS. PLAIN LANGUAGE SUMMARY: The National Disability Insurance Scheme (NDIS) provides funding for people with permanent and significant disability. Children with cerebral palsy (and other complex disability) are lifetime users of the NDIS. For children with complex disability, their families are crucial to ensuring that their daily needs are being met, including providing medication. Previous research indicated that parents rely on the NDIS to support their children; however, there have been various challenges such as long wait times for equipment and difficulty understanding how to use the scheme. This study explored the experiences of families of children with complex disability, after more than 3 years of being an NDIS participant. Eight parents from one therapy service provider completed a short questionnaire about themselves, their child, and their family, followed by an interview with the first author. Four authors (occupational therapists) worked together to design and implement this study. The findings highlighted several key points: the important role of parents as caregivers; parents became more knowledgeable and confident to navigate the NDIS with time; equipment funded by the NDIS was life-changing; the NDIS has ongoing issues; and the crucial nature of the NDIS. Occupational therapists can be extremely important to families, including with supporting families to navigate the NDIS and advocating for them. Occupational therapists must stay current with their knowledge of the NDIS as they provide lifetime support, including prescribing equipment, technology, and home modifications.

Fathers of children with a disability: health, work, and family life issues.

PURPOSE: Fathers in families raising children with disabilities are under-researched. Fathers' perspectives can be better accommodated in childhood disability services that operate on a family-centred paradigm if their perspectives are understood. This study aimed to investigate the perspectives of fathers on caring and family life, work, and health. METHODS: A mixed-methods design with an online questionnaire included open-ended questions and three instruments: Depression Anxiety Stress Scales (DASS); Health Promoting Activities Scale (HPAS-M); Fathers of Children with Developmental Challenges (FCDC) Scale. RESULTS: Fathers (n = 33) reported high depressive (58%), anxiety (37%), and stress symptoms (61%). Fathers reported low participation in health-promoting activity with less than weekly: planning health activities (58%); solo physical activity (26%); social activity (3%); time relaxing (16%). Sixty-four percent worked full-time, although work was reported to be challenged by family responsibilities. Fathers described directly caring for their children although service interactions were low and delegated to mothers. CONCLUSIONS: Fathers in this study reported stress, mental health issues, and low participation in healthy activity. Fathers experienced challenges related to career progression and job choices due to family responsibilities. Providing individualised and responsive support to fathers of a child with a disability would better support the family unit.IMPLICATIONS FOR REHABILITATIONFathers of children with a disability in this study experienced high mental health symptoms.Fathers were involved with their child's care at home but had low service interactions suggesting that service providers need to discover new ways to better engage fathers.Fathers experienced challenges to participation in paid work secondary to care responsibilities for their child with a disability and resulting needs of their family.Services that better support fathers are important to promote better health and wellbeing and support families.

Controlled choice, not choice and control: Families' reflections after one year using the National Disability Insurance Scheme.

INTRODUCTION: At least 40 percent of children with cerebral palsy and their families rely on access to allied health services, assistive technology, and require funding and expertise to achieve skills and participate in daily life. Implementation of the National Disability Insurance Scheme (NDIS) has resulted in a shift to public funding and emphasis on choice and control of services, support and assistive technology to promote social and economic participation. Families of children with cerebral palsy are invested in scheme success and their subjective experiences require consideration if the NDIS is to meet participation targets. OBJECTIVE: The aim of this research was to explore the experiences of families with a child with cerebral palsy, who have been in receipt of the NDIS for 12 months, comparisons to previous funding systems, and recommendations for the NDIS going forward. METHODS: Purposive sampling was utilised within one specialised paediatric setting. All families received occupational therapy intervention for their child. A qualitative approach using semi structured interviews was employed. Braun and Clarke's six phases of thematic analysis was utilised to analyse the data and explore participants lived experiences. FINDINGS: Eight (n = 8) mothers of children with cerebral palsy were interviewed. Three overarching themes were derived from the data: Equipment impacts on all areas of life; Frustration navigating the National Disability Insurance Scheme; and Gratitude, hope and suggestions. CONCLUSION: Families reported challenges navigating the NDIS including administrative challenges and extensive wait times for assistive technology, as well as gratefulness for increased opportunities for support. Occupational therapists and other allied health professionals can assist by: being proactive in service delivery and advocating for the needs of individual families and children; and finding ways to increase the preparedness of the NDIS to better understand the needs of children with cerebral palsy and their families.

Evaluation of the UK Public Health Skills and Knowledge Framework (PHSKF): implications for international competency frameworks.

BACKGROUND: The value of competency frameworks for developing the public health workforce is widely acknowledged internationally. However, there is a lack of formal evaluations of such frameworks. In the UK, the Public Health Skills and Knowledge Framework (PHSKF) is a key tool for the public health workforce across the UK, and this study presents the evaluation of the PHSKF 2016 version, with the aim of reflecting on implications for international public health competency frameworks. METHODS: A sequential explanatory design was employed. An online survey (n = 298) was completed with stakeholders across the four UK nations and different sectors. This was followed by 18 telephone interviews with stakeholders and survey completers. Quantitative results were analysed descriptively; qualitative transcripts were analysed with thematic analysis. RESULTS: Most respondents had used the PHSKF occasionally or rarely, and most users found it useful (87%) and easy to use (82%). Main purposes of use included team/workforce development (e.g. setting of standards) and professional development (e.g. identify professional development opportunities). Some positive experiences emerged of uses of the PHSKF to support organisational redevelopments. However, 23% of respondents had never used the framework. Areas for improvement included greater clarity on purpose and audience, the need for more support from employers and for clear career progression opportunities, and stronger links with other competency frameworks. CONCLUSIONS: The development of a digital version of the PHSKF, together with improving buy-in from the workforce and employers could make an important contribution towards UK public health workforce development. Further evaluation and shared learning internationally of the implementation of public health competency frameworks would support global public health workforce development.

School success and participation for students with cerebral palsy: a qualitative study exploring multiple perspectives.

PURPOSE: This qualitative study investigated perceived successful school experiences for students with cerebral palsy in Australia. Participation and appropriate support in school are complex concepts, although few studies have investigated all stakeholders' perspectives. METHODS: Phenomenology informed the study that centered on the concept of a successful school experience. In-depth interviews occurred with students (n = 7), parents (n = 11), teachers (n = 10), school principals (n = 9) and allied health practitioners (n = 10) to gain the perspective from multiple vantage points. Specific research questions, interview guides and demographic questionnaires were configured for each group. Interviews were analyzed thematically within and between groups. RESULTS: Three key themes emerged: Collaborative partnerships between families, schools and outside organizations; School culture and attitude is key; and, allied health practitioners are part of home and school teams. CONCLUSIONS: Student and school success was impacted substantially by the capacity of adults in the student's life to collaborate - family, school professionals and allied health practitioners. An inclusive school culture was crucial to students with cerebral palsy. All parties needed to prioritize promotion of an open and positive school culture built around problem-solving inclusive practices. Involved people, such as allied health practitioners, bring knowledge and skills that are not otherwise readily available in school environments. Implications for rehabilitation Students with cerebral palsy have high needs at school and allied health practitioners have a role advocating for, educating and providing support to students within the school. Teachers of students with cerebral palsy need education, training and support from allied health practitioners. The need for allied health and rehabilitation services continues for children and youth with cerebral palsy outside of school and across the schooling years. School professionals; allied health practitioners; families and students can work together to improve the student experience.

Complementary, Alternative, and Mainstream Service use Among Families with Young Children with Multiple Disabilities: Family Costs to Access Choices.

ABSTRACT Families raising a young child with multiple disabilities are charged with significant responsibilities such as learning about their child's condition and navigating mainstream and alternative services. Aim: Describe service choices, costs, out of pocket expenses, and the impact on families. Methods: Survey design using a custom questionnaire was used to collect extensive retrospective and current data. Purposive sampling (N = 29) occurred from one early intervention facility specialized in servicing children with cerebral palsy (CP) and, or multiple disabilities in Australia. Descriptive statistics were used for analysis of data. Results: Twenty-three (79%) families reported caring for a child with CP. Twenty-three families reported using at least one complementary/alternative intervention. Out-of-pocket amounts were reported including: chiropractic services (10 families); naturopathy (9 families); point percussion therapy (7 families), and Chinese medicine (6 families). Expenses resulted in families reporting forgoing clothing items, family entertainment, recreation/hobbies for parents (55%); family holidays (59%); time for parents alone (66%); and health services for parents (38%). Conclusions: Families of young children with multiple disabilities select a wide range of services for their child, with consequential out of pocket expenses. Early intervention professionals can be an important resource for families as they evaluate their choices and select interventions for their child.