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Making a House a Home: Part Three

In the final part of our ‘Making a House a Home’ stories, we asked Donna Newman what she sees as her role in helping to make a house feel like home again, the support she puts in place and the actions she takes.

The house as a building

“It’s really important to involve the whole family’s needs when purchasing, renting or adapting a home. It needs to be suitable for the care needs of a child, but also family life. It could be ensuring there is a spare room to make into a playroom or a space for music therapy, Speech and language therapy or where occupational therapists can teach the family how to play games with the child.

“Where intense hydrotherapy is required and a pool is requested, you need to ensure it is large enough for the family to enter together, so that they can take part in family swim time. A secure cover is also needed to prevent children falling in to the pool, when not in use.

“The space within the house also needs to consider therapy rooms where exercise equipment may be required.

“It’s essential that when adapting a house, the family have separate spaces to the care team. This requires careful planning and you sometimes see extensions to the house to include facilities such as wet rooms, carers bedrooms and kitchen etc. The client should still be able to access all areas of the house, so you may have to look into ramps, lifts and door widening for wheelchair access.

“Whilst all of these considerations are for the child and their family, the care team must always have their own space to sleep, prepare meals and eat in order to ensure privacy in the home. A separate entrance for the care team allows them to enter and leave the home without disturbing the rest of the family.”

The home environment

“Care agencies are not permitted to provide supervision for other children in the home, however when planning any adaptations, you should consider that some siblings may share rooms. A live-in Au Pair or Nanny can be considered for the family as secondary support if the family is unable to provide care due to the injured child’s needs or work. Whilst employed childcare for siblings can appear costly, getting the family balance right is important and where it’s possible to provide additional support this means all children can go out to the park for example instead of siblings being left at home whilst carers take the child out alone.

“As I mentioned above, the home environment is enhanced by creating spaces. The lounge and/or playroom should be a tranquil place where the family can be a family and consideration should be given to spaces, where the parents can go when they need time to work and relax.

“The garden environment should also meet the accessibility needs of a child and be a family space for enjoyment. Ground level trampolines can be used by the whole family and hoists can be installed to allow access to basket swings and play equipment.

“In all considerations, the future needs of the child should be addressed from the outset. It can be a costly exercise to only focus on the home today. As the child grows, you will need to think about their independence needs as well as how to keep them involved in family activities; things like worktops at wheelchair heights to get involved with preparing meals. It can be simple measures that lead to increased inclusivity and connect the family.”

 Lifestyle

“Parents will also require some respite away from the home and it’s important to provide care support to enable parents to access hobbies and lifestyle choices such as the gym, go out for a meal together or see their friends. This will help parents to maintain a healthy relationship and good mental health which in turn will help them to cope better with their new normal.”

Technology

“Case managers should consider smart technology in the home when searching for properties to rent or buy or adapting existing accommodation. Smart home technology has developed considerably over the last few years and can now provide greater accessibility and inclusivity for children and their families. Smartphones, tablets and voice activated hubs can control resources in the home which make a big difference. It still fascinates me that eye gaze devices can be used to turn the TV on and change the channel!

“Automatic lighting should be considered alongside automatic doors for wheelchair users. The house shouldn’t feel restrictive to anyone living in it in order to make it feel like home.

“Ovens can be programmed to switch off when they open the door and restart when they close it; a great tool as a child grows up and wants to be independent and active in the home. They can also support the visually impaired to know when food is ready.

“For security considerations, smart locks and smart doorbells can be installed. This is particularly important with many care teams and professionals coming in and out of the home. Feeling safe is a basic need which shouldn’t be overlooked. CCTV can also enhance this safety if the family would like it and as well as reassurances around safety it can also be used to communicate with care teams or call for help.”

Case management in action

“I conducted an Immediate Needs Assessment with a family who’s five year old daughter was diagnosed with quadriplegic Cerebral Palsy and they also had a two year old daughter. They were living in a third floor, one bedroom flat with no lift; leaving their daughter’s wheelchair at the bottom of the stairs and carrying her up.

“The whole family slept in one bedroom with the living room having a hospital bed and the child’s equipment in it, with gastronomy feeds and syringes were kept outside the front door, on the landing. There was an extreme, immediate need to house this family in safe, suitable accommodation before even thinking about making the house a home.

“I moved the family into rented accommodation which had five bedrooms as the family had since had another baby and the grandmother was planning to move in to help. The client’s bedroom was on the ground floor and she had an en-suite which we were able to fit with a hoist, however we still faced problems as the bathroom was too small to fit a wheelchair in and transfer her to the shower safely.

“We considered extending the wet room however at a cost of £15,000 and a request from the landlord to return the wet-room to its original structure when the family left, a cost of £30,000 was unjustified. The family decided to not carry out the work, as they would be purchasing a home in the future.

“Track hoists were put into the client’s bedroom and family lounge and a separate lounge was made available for the parents to rest in and entertain friends. We bought a table and chairs so that meetings could be held and office furniture was sourced.

“Within a month of the move, a 1:1 care team was introduced which provided day cover when the child was not at school, as well as waking night cover. We formulated a full MDT including physiotherapy, occupational therapy, speech and language therapy and music therapy too.

“The younger sibling had developed selective mutism due to the changes within the family and a psychologist was instructed to provide sessions for the parents and sibling; together and separately where needed.

“The younger sibling was also included in occupational therapy and speech and language sessions and she quickly learnt to troubleshoot any problems with the eye gaze device and become a great communication buddy; helping her sister communicate through play. There were in no doubt things she struggled with, however and she began asking questions about why her sister did not speak to her or why she was unable to walk. Having a great psychologist in place meant that she could explore this and explain in an age appropriate way, which helped the sister to feel empowered.

“Throughout the whole process the family have been fully accepting of advice from me and the therapy team and all recommendations were put in place quickly. I really believe that this comes from a place of trust and building rapport and being in a unique place to be able to lift the family from a house that really couldn’t meeting their needs and placing them in a home that enabled them to thrive as a family.

“They’ve now purchased a five bedroom house which will be adapted to ensure their home brings joy, safety and the perfect environment to raise children, no matter what their needs.”

As an experienced case manager and registered nurse working with children and young people, Donna has shared her skills and experience of making a house a home; a quality shared by many of our paediatric case managers along with education, safeguarding, transitions and child development.

For more information about our children and young people’s case management service visit ../Children and young peoples case management page