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Hospital-to-Home Transition Support for Children with Complex Care Needs

For many families, bringing a child home from the hospital can evoke both joy and anxiety. It marks a significant milestone that is both welcoming and, at times, can feel daunting, complicated, and frustrating.

As a parent or guardian, you are not only managing your child’s medical needs but also navigating a range of emotions, practical support, and resource requirements. You may have numerous questions about caring for your child, the available support options, and how to ensure a smooth transition. Being well-prepared and knowing where to find assistance can make a significant difference in this process.

Fortunately, there are various disability support services and reputable organisations ready to guide you through these challenges. They can provide information, financial aid, and logistical support to help you feel prepared and supported.

Above all, take a moment to embrace this experience.

Planning to bring your child with complex care needs home.

Children with complex care needs benefit greatly from multidisciplinary support that focuses on their quality of life and overall wellbeing. These teams work together to nurture and enhance all aspects of the child’s care and development. Evaluating these needs is essential during the transition phase. It includes considerations such as medical care, daily assistance, social interactions, and respite for parents.

Medical and care considerations

Returning home from the hospital represents a significant shift in the home environment. It brings additional tasks and responsibilities for parents or guardians, such as managing medications, scheduling appointments, and communicating with healthcare professionals. Without adequate support, these responsibilities can quickly become overwhelming.

Building the right care team can greatly improve your experience, help coordinate care, and provide you with much-needed peace of mind.

Questions to consider about medications and care

  • Do I have a complete outline of my child’s medical needs at home? Do I understand medications, dosages, ventilators, feeding tubes, or tracheostomy care?
  • In what areas of care do I need additional training and information? Am I confident, or who can I ask for help?
  • Do I need extra care at home for my child from specialist nurses and support workers? Does it meet hospital standards?
  • Do I have a multidisciplinary care team outside the hospital for doctors, specialists, therapists and nurses?
  • Do I have a plan if there’s an emergency?

FAQs

What does medically complex care mean?

“Medically complex” is a term often used to describe a child or individual with a serious health condition affecting different parts of their body. These conditions can be something they are born with or something that happens later in life.

Children with medical complexities need the highest level of care and support, often more than regular hospitals can provide. They face many health challenges that most people don’t have to deal with, and their families also work hard to ensure they get the best care.

How does At Home Care support children with complex care needs?

Our specialist paediatric nurses and qualified support team provide in-home care for children with complex care needs and offer respite for you. Our goal is to keep your child out of the hospital and in the safe familiarity of their own home.

Our specialist paediatric nursing and disability support services include:

  • Specialist paediatric nursing and 24/7 in-home support
  • Clinical support and training for you and your child’s school
  • Planned and emergency in-home respite
  • Daily living support 
  • Social and community participation
  • Child-specific care and equipment training

NDIS and funding support

Additional funding support can help ease the burden of bringing your child home and providing the necessary ongoing care. Your child may be eligible for funding from organisations such as the NDIS (National Disability Insurance Scheme), insurance schemes, or registered charities. Seeking advice from professionals, such as NDIS Support Coordinators and Plan Managers, can be beneficial in navigating funding and services throughout your journey, especially as your care needs change.

Collaborating with a team of Support Coordinators and Specialist Care Providers can help you understand the care for which you are eligible, advocate on your behalf, navigate the approval process, ensure adequate support, and avoid any gaps in care.

Questions to consider about the NDIS & Funding Help

  • What funding can we get to help with care? The NDIS and other programs may provide support.
  • How do we apply for NDIS funding? A support coordinator can help guide you through the process.
  • What if our funding request gets denied? You can appeal the decision and fight for the help your child needs.
  • Will our support plan change as my child grows? Yes, and it’s important to review it regularly.
  • What level of care do I need?
  • Do we need home modifications or assistive devices?

Daily living, social engagement, and community

Returning home can present additional challenges and a shift in pace, particularly with going back to school or limited social support. Physical adjustments, such as restricted mobility, may necessitate help with tasks like bathing, moving around, or making environmental changes if modifications are needed for medical equipment or assistive devices.

Questions to consider about prepping for the day-to-day

  • Is the house safe, accessible, and adequately equipped?
  • How do we find good support workers or nurses? Look for people who match your family’s needs and whom you trust.
  • Do we need to change our home? Some modifications may be required to make things safer and easier.
  • How can my child stay socially active? Joining inclusive programs and finding peer support groups can help.
  • Do we need to review schools?

Parent and carer wellbeing

As a parent or caregiver, it’s normal to feel overwhelmed, stressed, or in need of a break – and that’s perfectly okay. Whether you have a strong support network or are looking for outside help, various online and in-person services are available. These services can assist you in managing feelings of exhaustion and burnout while also helping you balance the demands of constant care, lack of sleep, and the need for respite.

Questions to consider about parental wellbeing

  • What if I need a break? Respite care is available so you can rest and recharge.
  • Where can I connect with other parents? Support groups and online communities can be a great source of help.
  • How do I avoid getting overwhelmed? Taking breaks, joining support groups, and practising self-care can help.
  • How do I balance caregiving, work, and family? Setting routines and asking for help can make it easier.
  • Where can I go for emotional support? Social workers, therapists, and other parents can offer guidance and encouragement.

Identifying Resources

After you have set up a care plan for your child’s complex care needs, the next step is to find the resources and services needed for your child outside the hospital. Clearly outlining these needs will help your family feel more prepared and confident in managing your child’s care at home. It is also important to connect with community support systems. They can help you discover available resources such as local support groups, educational programs, and financial assistance services.

  • Allied health professionals: Providing ongoing specialist and therapeutic support, such as dieticians, physiotherapists, speech pathologists, or occupational therapists.  
  • Hospital Discharge Coordinators: Help with the transition and training.
  • Specialist Paediatric Nurses: Offer ongoing medical support and services, such as continence, training, and ongoing healthcare.
  • Specialist Disability Providers: Provide trained paediatric support workers and nurses at home and in the community.
  • NDIS Specialist Support Coordinator: This role addresses barriers to access to support services and helps design service plans that are aligned with the child’s needs.
  • Local or Online Local or Online Offer a community for sharing resources, support, advice, and encouragement.
  • Mental Health Professionals: Help parents cope with stress and emotions.

Planning for your child’s transition home is essential for both their wellbeing and yours. With support from healthcare providers, disability organisations, and specialised paediatric nurses, your child can thrive at home. It will be a big change, but you are not alone. With the right information and support, you can create a safe and loving home.

If you need support during this transition, contact our team today to learn how we can help your family.

How can we help?

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