Case Study | Paediatric Disability: OT supporting re-housing

Client confidentiality To protect identities, names and other details have been changed. Images, including those of individuals, are from a stock library.

The information below was submitted by an occupational therapist (OT) to a local government housing department, following their specialist assessment at the child's home.

The Occupational Therapy Re-housing Report supported the family to move to a property more suited to the son's needs. This provided improved access and safety, greater independence and ease of occupational engagement within the home.

Service: A community-based children's team, run by a UK council, supporting individuals with disabilities, up to the age of 18 years old.
 

Client name: 'Max'

Age: 16

Assessment date: May 2022

Max lives with his loving and supportive mum Julie and his sister. He attends a special school. In his leisure time, he enjoys his food, water play, swimming and loves to be outside.

Max has the following medical diagnoses:

He has no useful hearing and relies on visual means of communication. He uses inhalers to manage his asthma and takes medication to manage the chronic lung disease. As a result of his diagnoses, Max presents with:

Max is unable to sit with his legs extended in front of him, as he has increased muscle tone; he therefore tends to kneel. He wears supportive boots. Max underwent surgery in February 2020, for a bilateral distal femoral extension osteotomy and patella tendon advancement procedure (Stout, Gage, Schwartz and Novacheck, 2008). This was to treat persistent crouch gait from his cerebral palsy. Max cannot maintain a good upright sitting position; he can find it difficult to effectively and efficiently use his arms and hands to support his posture. Julie does not report Max to have any spinal concerns or abnormalities.

Max likes to move around as independently as possible. He does this by crawling, using a walker or walking very short distances, with hand-held support. He will occasionally 'furniture walk' (on good days), but his balance is limited and this is therefore not consistently safe. He has a standing frame - provided by his physiotherapist in school, as a part of ongoing therapy - and has a buggy for outdoor use. Max has a stair lift at his current home. He occasionally walks up the stairs, by holding onto the banisters and with close physical support. However, this has yet to be observed to be consistently safe. Max can 'bum-shuffle' down the stairs.

Whilst improvements have been made, he finds it difficult to transfer in and out of the bath, his seating and his standing aid. As his immune system is weakened, he is vulnerable and susceptible to chest infections. When he becomes unwell, it can take months to get back to his baseline.

During this time, it can be extremely difficult to negotiate stairs, mobilise around the home and transfer in and out of equipment.

Max has required hoisting during this period in the past and has a mobile hoist at home.

Linked to his diagnoses - and particularly communication impairments - Max can show frustration physically, as cited in his Education Health and Care Plan review. ['EHC plans identify educational, health and social needs and set out the additional support to meet those needs' (GOV.UK, 2022a)]. His previous OT observed that, if he is upset, frustrated or not in a good mood, he can shout, cry, throw things, hit others and occasionally bite himself. This can disrupt his daily routine, as family members cannot get too close to him to assist. Incidents of Max harming himself and his mother are unpredictable; there are no consistent pattern or known triggers documented or reported.

 Max, his mum and sister currently reside in a privately rented, detached 4-bedroom house. The property was originally built as an office, so is not optimally set up to support Max's needs. Julie reports she took it on as a project and has been trying to do it up bit-by-bit. With Max's mum's own health needs (hip surgery and past cancer) and responsibilities supporting both her children, she has been finding the house difficult to manage. Julie works full-time as a teacher and can find life challenging as a single mum. She requires support from her eldest daughter to care for Max.

The landlord of the current property was reported to have not consented to suggested major adaptations required to meet Max’s needs. Sadly, the landlord has passed away, leaving the family feeling unsettled about what this means for their tenancy.

The property is too small for safe transfers, with insufficient space for an accessible bedroom and level access shower, particularly for the size Max requires. There is not sufficient space to store or make use of Max’s mobility equipment. The doorways are too narrow for him to mobilise through using his walker and some are too tight for him to be pushed through in his wheelchair. Therefore transfers often take place in the hallway.

Front Access

Off-street driveway leads to a narrow path and then steps up to the front door. There is often a mobile suitcase ramp in situ; a temporary measure to make transfers into the house in a wheelchair slightly easier for the family.

Ground floor

On entering the house, there is a very small toilet to the left, with a free-standing toilet frame in situ. The space is insufficient for easy, safe daily transfers. Stairs on the left lead to the first floor. To the right of the front access is a large living room, but cluttered with furniture. The door width into the living room is only 72cm. Max has a large stature and is assisted using a wheelchair to enter it when arriving home. At the end of the living room is an adjoining small dining room. To the left of the dining room, through another doorway, is the kitchen.

First floor

Steep and curving stairs with a stair lift (on left as ascending) leads to the first floor. At the top of the stairs is the bathroom, which has a standard-height bath only. The wooden flooring is warping and wet due to faulty piping and water damage. There is a toilet in the bathroom with a ‘mowbray’ toilet seat/frame. To the right of the bathroom is Max’s bedroom. Julie's bedroom is to the right of his, then leading to his sister’s bedroom.

Rear Access

The kitchen leads through to the rear garden, which Max is unable to access properly. He has a rear access ramp, previously fitted via a disabled facilities grant (DFG; UK-specific support). This ramp almost fully covers the only level area in the garden where Max could use his walker. There is a large grass area beyond the ramp, however this is not level. Although Max is able to use the ramp to access the house in his attendant-propelled wheelchair, this requires more effort from his mum. She is required to support him out of the car and into his wheelchair before pushing him down the side of the house, up the ramp, into the kitchen and through to the hallway.

Overall house condition

The interior of the property is in a poor condition. It requires maintenance and presents falls and other hazards to Max, putting him at risk of injury. For example: parts of the ceiling are falling through in the kitchen; there are poor pipe works in the bathroom and leakage; flooring has come up in places. Julie has tried hard to maintain parts of the house, but this has proven difficult.

Max requires a property that provides level access into and within it. Assisted by equipment and his family, this will enable him to use essential facilities, to carry out activities of daily living (ADLs). Although he can currently access his first floor bedroom, this can be more difficult when he is unwell, or if he becomes upset and/or aggressive towards Julie and refuses to use the stairs. Whilst he occasionally uses a stair lift, he has gotten much bigger; the stairway is very narrow for his legs.

Max can sometimes transfer in and out of his bath, with equipment and supervision of one. However, it would be safer and conserve more energy if he had a level-access washing facility. This would also support Max to become a little more independent with self-care tasks as he gets older. Therefore, a ground floor bedroom, toilet and level-access shower would meet his present and long-term needs. All doorways need to allow for wheelchair and walking frame use.

Level access to a garden, with areas that are also level, would enable Max to access the outdoor environment and use his equipment.

A level garden would benefit Max particularly on days where he is upset and/or aggressive towards family members; access to the outdoors can aid self-regulation and support a sense of wellbeing (Pearson and Craig, 2014).

It would also be strongly desirable if parking was available close to the family home; either off-street parking, or an area where it would be easier to park close to the house. Applying for a disabled parking bay and badge would be recommended.
 

Max's occupational therapist (OT) requests that he and his family be accepted onto the housing register as a high priority, with access to adapted or adaptable housing that will meet his needs. OT has assessed that Max meets the criteria for having an 'urgent housing need, due to health or welfare circumstances’:

A future, more suitable property may still require major or minor adaptations, to make it fully accessible and suitable for his needs.

Therefore, following future assessment by his OT, Max's family could be supported via a DFG. A DFG allows families to change their home in a number of ways, including:

(GOV.UK, 2022b)

OT is requesting that Max and his family be considered for a property that supports either ground floor living or has appropriate space for a through-floor lift. The house would require space to support provision of Max’s equipment, plus carer space and turning circle space for complex transfers, during periods where he may require hoisting.

Max’s needs could be met via:

GOV.UK (2022a) Children with special educational needs and disabilities (SEND). Available from: https://www.gov.uk/children-with-special-educational-needs/extra-SEN-help. Accessed 20 November 2022.

GOV.UK (2022b) Disabled Facilities Grants. Available from: https://www.gov.uk/disabled-facilities-grants. Accessed 20 November 2022.

NHS (2022) Overview - Cerebral Palsy. Available from: https://www.nhs.uk/conditions/cerebral-palsy/. Accessed 19 November 2022.

Pearson, D.G. and Craig, T. (2014) The great outdoors? Exploring the mental health benefits of natural environments. Frontiers in Psychology. 5:1178. Published 2014 Oct 21. doi:10.3389/fpsyg.2014.01178. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4204431/. Accessed 21 November 2022.

Semantic Scholar (2008) Distal femoral extension osteotomy and patellar tendon advancement to treat persistent crouch gait in cerebral palsy - Fig. 1-A Fig. 1-B Fig. 1-C (image). Available from: https://www.semanticscholar.org/paper/Distal-femoral-extension-osteotomy-and-patellar-to-Stout-Gage/9765a6fffeea874a9a1572b99bafa148f55027d0. Accessed 19 November 2022.

Stout, J.L., Gage, J.R., Schwartz, M.H. and Novacheck, T.F. (2008) Distal femoral extension osteotomy and patellar tendon advancement to treat persistent crouch gait in cerebral palsy. The Journal of Bone and Joint Surgery. Nov; 90(11): 2470-84. doi: 10.2106/JBJS.G.00327. PMID: 18978417. Available from: https://pubmed.ncbi.nlm.nih.gov/18978417/. Accessed 19 November 2022.