Discharges from hospital - intellectual disability case studies

Dan is 19 years old. His family speak a language other than English at home and he has intellectual disability. He is non-verbal. He was discharged from hospital following planned orthopaedic surgery and the insertion of a gastrostomy tube for feeding and medications. His family picked him up from the hospital to take him to his supported accommodation.

Dan’s family did not receive a discharge summary or written information about his feeding regime for the new gastrostomy tube. His discharge occurred a day earlier than expected.

The staff at his supported accommodation sought help from their disability service clinical staff and the hospital, as they thought Dan was dehydrated and were not confident with gastrostomy feeding.

The family were confused about the amount of fluids Dan was meant to be receiving. The accommodation service was not involved in Dan’s final few days in hospital.

The staff contacted the hospital for the discharge summary and feeding plan, but Dan’s notes were in medical records waiting to be scanned and could not be accessed.

They contacted the hospital dietician who gave a temporary feeding regime over the phone with advice to seek medical help or return to the emergency department if further concerns arose.

Additional information

• The hospital staff had demonstrated gastrostomy feeding to the family and support staff while Dan was in hospital, but they had not practised the procedure themselves.
• Hospital pre-admission planning had developed a patient risk profile for Dan.
• Discharge was rushed the day before expected.
• The family spoke English but their level of comprehension was not checked or supported with appropriate written information.
• The disability supported accommodation service employed a clinical staff member.
• Dan did not re-present to the emergency department about his feeding regime and dehydration. He had a GP in the community and the medical discharge summary was received after five days.
• There are generic resources available about gastrostomy feeding, including the Caring for People with Gastrostomy Tubes and Devices.

Joe is 40 years old. He lives in disability supported accommodation with access to clinical support. He had a planned hip replacement. He is mobile and has moderate intellectual disability.

Disability support staff were involved with health staff in preadmission risk identification and planning to provide a smooth transition from surgery to rehabilitation and then to supported accommodation.

Surgery was successful with minimal medical complications.

The acute rehabilitation in the hospital lasted two weeks when sudden discharge was planned based on the assumption that the disability provider offered acute rehabilitation support, such as physiotherapy and occupational therapy in Joe's supported accommodation. The NDIS had not been aware of his admission or discharge.

At preadmission, rehabilitation was planned for four weeks, instead of the usual two, in view of the patient’s intellectual disability. The rehabilitation staff were not present at these preadmission planning discussions. Therefore they did not have the opportunity to discuss eligibility criteria for rehabilitation.

Due to the earlier than planned discharge, there was no clear pathway of support and rehabilitation. The disability service negotiated the community post–acute care team to provide occupational therapy home assessment, a task usually done by the hospital occupational therapist.

Additional information

• Discharge planning in rehabilitation was complicated by misunderstanding and lack of advocacy about who was the carer and the person responsible, and Joe’s capacity to make decisions regarding the discharge process.
• There was no case conferencing.
• The disability support service staff visited Joe in rehabilitation in hospital, but different staff came each time and there was no clear communication chain back to the service and health staff were unsure regarding the key worker.
• There was no appropriate easy-read information or explanation for Joe about how he could give feedback about his experience of the health service.

Simon is a 14-year-old boy. He attends a mainstream school. He has intellectual disability and had planned orthopaedic surgery three years ago. He lives in a regional area of NSW and is cared for by his father. He was discharged from hospital three years ago with a wheelchair and crutches and follow-up referrals and occupational therapy appointments regarding equipment. No follow-up appointments were attended.

Simon recently transitioned from primary school to high school and came to the attention of the high school staff who contacted the local hospital occupational therapy staff about Simon’s wheelchair. He has been attending school via taxi each day due to the wheelchair.

At the time of the referral for surgery, the general practitioner had made an application for a government disability services case worker to be allocated. The paperwork involved in this was extensive and the general practitioner had no feedback on the progress of the allocation. No case worker was allocated and no disability therapy staff were engaged.

Additional information

• A child with intellectual disability relies on an adult advocate or other responsible person.
• Without an engaged and aware parent, a general practitioner practice nurse, a disability case worker, a safety net around health follow up appointments, and discharge planning which flags intellectual disability, (including in day-surgery), people with intellectual disability can fall between the cracks in a busy system. Simon remained in a wheelchair for years beyond reasonable expectation.

Jenny is 17 years old. She lives between her single mother and supported accommodation and has a severe intellectual disability. She also has a mental illness and challenging behaviour. The state Department of Families and Community has at times been involved in her care arrangements and child protection concerns. Jenny’s mother has another child who is preschool age.

Jenny has a disability case manager who has organised a referral to a specialist intellectual disability health team for review of mental health and gynaecological problems. She had an intrauterine device inserted some years ago but heavy menstruation and failure to attend regular medical checks have prompted this referral. She is also due to transition from paediatric to adult health services.

Following intensive pre-admission planning for removal of the intrauterine device a specific pathway was developed around:

• going to the care by parent ward following her surgery
• having allocated health staff there to ensure she is appropriately cared for
• ensuring her anxiety and challenging behaviour does not escalate.

While under the general anaesthetic, she was to have further blood tests and a dental review.

Discussions with Jenny’s mother revealed that she no longer wished to care for Jenny. The Office of the Guardian became involved.

Jenny has a local general practitioner, however rarely attends appointments. The general practitioner has been able to organise private specialist intellectual disability psychiatry services where the psychiatrist will bulk bill, but Jenny did not attend. Generally there are few available specialised adult psychiatrist who bulk bill. Jenny’s mother has used a regular after-hours general practitioner service when required for medical issues. They come to the home, but this was expensive for her.

The pathway for pathology and sedation for Jenny was individually negotiated as adjustments were required in order for Jenny to access health services.

Jenny underwent the surgery and was cared by specially allocated staff in the care by parent ward until discharge. Her follow up appointments were closely monitored and some occurred in her own home.

Additional information

• The process relied on the good will of many health and government disability support staff. It is not embedded in, or driven by, health or local policy.
• The capacity of Jenny’s mother to drive care and intervention has proven to be limited.
• Jenny’s vulnerability is complex and there is a potential for risk to her wellbeing as she moves into adulthood. Referral to local adult specialist intellectual disability health services for ongoing care is proving problematic.
• Attempts to transition Jenny’s care to adult services highlighted a shortage of adult services skilled to support Jenny within the local health district for Jenny to access planned hospital admission and surgery.

Jay is a 21-year-old male who lives in rural NSW. He has mild intellectual disability, is non-verbal and needs assistance with all activities of daily living. He is cared for at home by his grandmother.

Jay was admitted to hospital via ambulance from his post school options day program with seizures and queried aspiration pneumonia. He has a history of seizures and has a neurologist who flies out to see patients in a rural outreach clinic. Normally he has a soft diet and thickened fluids.

On admission to hospital he went to the intensive care unit and was on a ventilator for six days before he was able to go to a high dependency unit.

Jay’s grandmother was very anxious about the hospital admission and about her ability to cope when Jay was due for discharge. She normally had a support worker for herself, and four disability staff for Jay – case manager, disability support program manager, disability support worker and occupational therapist.

While in hospital Jay had medical, nursing, allied health and discharge planning staff involved in his care. Jay’s grandmother also had the hospital carer support worker involved. There was no general practitioner involved in Jay’s care. Case conferences and discharge planning involved many people and agencies and it was not always clear who was co-ordinating care in the community.

During Jay’s admission, his grandmother decided she was unable to continue to care for Jay and asked for arrangements for supported accommodation in the community to be organised for him. This was explained to Jay.

After some months of waiting in hospital for suitable long-term accommodation, Jay’s grandmother decided to care for Jay at home, with regular respite, until long-term care was available. She did not follow the medication regime as prescribed by the neurologist, resulting in increased seizure activity. She was waiting for the next rural outreach clinic to voice her concerns regarding the current dosages. While in respite accommodation, another unplanned and lengthy admission to hospital occurred due to aspiration pneumonia. This resulted in Jay waiting in hospital for a suitable long-term bed to become available in the same supported accommodation.

Intensive discharge planning and support staff education followed when a bed did eventually become available.

Jay did not attend post school options for more than 12 months around these hospital admissions. He also required mental health support.

Additional information

• Case conferences can be undermined by competing agendas, and need clear leadership and co-ordination to be effective.
• People with intellectual disability can be dependent on support staff across many different venues (school, post-school, work, respite etc). Lack of appropriate training and understanding by respite staff can have repercussions on the health of the person with intellectual disability.
• Without appropriate support and housing for people with intellectual disability the hospital admission can be prolonged to the point where the (mental) health of the person with intellectual disability can decline.

Derryk is an 11-year-old boy with attention deficit hyperactivity disorder and intellectual disability. He is in foster care and attends a special school. He lives in a regional area of NSW.

Derryk has a paediatrician who has been monitoring his violent behavioural outbursts. He has been managed in outpatient clinics for his violent outbursts but more recently has been presenting to the local hospital emergency department. Outbursts have involved people and property and require police and ambulance services intervention. Often he has been kept in the emergency department for an extended period and reviewed by a psychiatric registrar, before being transferred to the paediatric ward. He is considered too young for the mental health unit and the local health district has no child and adolescent mental health service unit. A private psychologist is involved in Derryk’s care.

During the last admission, the paediatrician liaised with one of the state’s paediatric tertiary hospitals where the mental health unit can take children under 12 years of age. No beds were available in a mental health setting and Family and Community Services had no alternate accommodation.

While he remained an inpatient, his medical team consulted with specialist psychiatry and involved the local assertive outreach team of the child and adolescent mental health service.  Case conferences included multidisciplinary and multi-agency teams as well as his foster carers. His inpatient stay was long and focused on optimising his medication and observing his behaviour. Eventually a bed was available in the tertiary paediatric hospital mental health unit. After treatment and monitoring there for some months, he was transferred back to his local hospital, where he stayed for many more weeks. Discharge planning processes continued locally.

While Derryk was in hospital, Family and Community Services were able to find suitable supported accommodation for him. His foster carers were uncertain of their capacity to continue to support Derryk in the longer term. They  declined to support him post-discharge. They had previously had parent support training but were suffering with depression and anxiety. Health and Family and Community Services worked to support and educate staff in supported accommodation to care for Derryk.

Additional information

• The period of hospitalisation and quality of life for a person with intellectual disability, are often determined by suitable discharge accommodation.
• Health and other agency partnerships around specialist intellectual disability mental health services can support local services and patients.
• Without more specialist intellectual disability mental health clinicians in NSW, access to a specialist intellectual disability mental health consultancy service is critical. A clear pathway to obtaining expert advice is needed.

Drew is a 26-year-old Aboriginal male with intellectual disability and cerebral palsy who lives with his parents in rural NSW. He has a nasogastric tube in situ for formula and medication.

He aspirated his formula while in respite care and was admitted to hospital with aspiration pneumonia.

There had been previous discussions with family about a gastrostomy tube, but it was later found not to be possible, due to Drew’s severe kyphosis. His family was never keen on the idea.

Nasogastric tubes are not the preferred long-term mode of feeding due to the risks involved. For Drew, they were often dislodged. As he lives in a rural area Drew by-passes the local hospital to attend the base hospital for replacement of his tube. There is no care coordinator to advocate for Drew, develop a pathway to care which could bypass the emergency department, or book regular appointments. Insertion requires a radiologist and having the correct tube available. This often means Drew is hospitalised for the weekend, kept hydrated with an intravenous infusion and waits for the tube or the radiologist to be available.

The hospital discharge planner identified issues around ongoing care and unmet needs. They were able to find and articulate a clear pathway through the health system which incorporated a multidisciplinary approach to care planning. Drew and his family were at the centre of discussions and were supported by the aboriginal health worker. The hospital discharge planner became the key contact for Drew within the health service.

Additional information

• Health staff can be overwhelmed by health complexity and / or how best to communicate when they encounter people with intellectual disability. Access to specialist multidisciplinary intellectual disability health services to build local capacity around communication, planning, pathway development and reasonable adjustments to services help in this regard.
• There is a need to empower parents and carers to have a voice in planning with health services.
• There is a need to distinguish between discussions about medical issues such as aspiration and quality of life including personal preferences which can take time and complex decision-making, and can sometimes benefit from the involvement of an advocate or specialist intermediatory services.
• The aboriginal health nurse has a crucial role in keeping the family engaged but there is a layer of complexity when health staff are involved both locally and at the regional level.
• Issues about person responsible and guardianship were raised during this admission.
• Drew’s general practitioner is relied on to set up the primary health service support system in this rural area. This is a complex task and not one easily supported. The role of the hospital discharge planner as Drew’s key contact within the hospital system and the pathways set up around him assisted his care and assist with family engagement.
• Education of respite support staff regarding risks of feeding via a nasogastric tube is crucial to Drew’s ongoing health and quality of life.

Russ is a 69-year-old male who has lived in the same supported accommodation since he was 15. He has a moderate intellectual disability and is non-verbal. He has been managed by medical and nursing staff employed by the disability service non-government organisation. He had private health insurance. He has had declining health, but has continued to work in an employment program and did not want to retire. He had a stroke and was transferred to hospital by ambulance.

A case coordinator became involved during the admission to source a higher level of care for Russ on discharge. Although he gained increased use of his limbs and his swallowing returned to normal, after the stroke and during his hospital admission, he could not return to his old accommodation. He spent nearly two months in hospital.

He was ineligible for inpatient rehabilitation admission due to his cognitive impairment and the rehabilitation protocols.

The non-government organisation was able to offer Russ a higher level of support in another facility, but required equipment to be prescribed and advice on his care and referral to community therapists. Through NDIS support, he hired the equipment when it was prescribed, to expedite the discharge.

The family sometimes missed the bedside medical rounds as they could not predict when they might occur. The case worker and family felt there was insufficient case conferencing and no well-developed and understood pathway of support for discharge. Russ’s parents were very anxious about a change to living arrangements at this stage of both their lives and Russ’s life.

Russ settled into his new accommodation well and over time his family bought the new equipment needed for his care, with assistance from funded therapists.

Additional information

• Health staff had assumed there was clinical support in Russ’s supported accommodation.
• Russ’s family was unaware of the presence or role of the carer support services in the hospital until after discharge.

Pat is a 34-year-old male with mild intellectual disability. He has had several unplanned admissions to hospital recently and a  complicated discharge home to a family situation needing additional support.

Pat has multiple health conditions and frequent hospital admissions, including admissions for mental illness. He has a discharge plan, developed with his program worker and the disability clinical nurse consultant (CNC).

On a previous occasion when unwell and out of area, he was taken to an unfamiliar hospital. The disability CNC was able to discuss a risk assessment and discharge plan with staff at case conferences. The admission and discharge home went smoothly and Pat was subsequently enrolled in community chronic health programs for his respiratory and cardiac health issues.

More recently, he collapsed and was taken by ambulance to his local, and familiar, hospital where he was an inpatient for ten days. Pat had been in the intensive care unit and was subsequently transferred to the ward, where he spent two days. The family had been involved in brief bedside discussions with the treating team while Pat was in the intensive care unit, but no case conferences had been organised. Hospital staff informed the disability CNC and caseworker of Pat’s admission after a week. The disability CNC had asked the treating team, via the hospital nursing unit manager, to keep Pat’s support network and family informed of plans for discharge and to follow his discharge plan.

Pat's discharge was determined on the medical round one morning, without the family or ward staff being present. When the family arrived mid-morning, Pat was in an agitated state, pacing and ready to go. Pat’s family spoke with the treating doctor about being unfamiliar with his daily dressings and injections. They were advised to take him to the general practitioner each day. The doctor was unaware that Pat was unlikely to cooperate with this plan. The long wait for the discharge summary, discharge medications and organising community services meant Pat’s behaviour escalated to violent outbursts and the family took him home without the documentation and services in place.

Community support for Pat’s health needs was quick and effective.

Pat was offered NDIS funded syndrome specific supported accommodation around this time. Despite the difficulties the family was experiencing managing Pat’s health and challenging behaviour, the family was divided about his need for supported accommodation. They were focused on the stress of the most recent hospital admission and discharge. Pat and the family continue to receive support around decision making. Pat continues to be non-compliant with medications and therapy for his multiple health issues.

Additional information

• The estimated date of discharge was not communicated to family, resulting in poor transition of care to the community and community services.

Mary is a 65-year-old female living in government disability supported accommodation in Sydney. She has intellectual disability and co-morbid complex mental health issues.

Mary has been in need of a gynaecology and gastroenterology review for ongoing health issues for some time, but has been reluctant to attend appointments. The team leader of the supported accommodation was a registered nurse with an understanding of the health system and health needs. After twelve months, supported accommodation staff managed to get Mary to see a general practitioner, who then referred her to the appropriate specialists. Staff found it difficult to explain to Mary in a meaningful way, how she would benefit from the medical appointments. The tests recommended were invasive – colonoscopy and hysteroscopy. Staff found their local hospital was not able to accommodate Mary’s specific needs and that another district hospital within the local health district suggested an innovative model whereby Mary was booked in to have both procedures done at the same time, while under the same anaesthetic.

The team leader from the supported accommodation attended the pre-operative meeting and asked relevant questions, such as how to manage the bowel preparation and how to give medications if Mary was fasting. Further discussions and follow up from the pre-operative appointment indicated a need for further collaboration.

The disability staff explored how Mary’s needs around communication, mental health and intellectual disability support, would be managed while she was an inpatient following her procedures. The disability team leader organised and participated in a pre-admission case conference. The team leader brought some suggestions for collaboration to the meeting. Although health staff were not familiar with these ways of working together, and the anaesthetist initially thought the concepts were unsustainable, with discussion, all members decided to work together and prepare for the procedure as best they could. It was agreed that Mary should be admitted 24 hours ahead of her scheduled procedure time. Disability staff would then familiarise Mary to the environment and aim to relieve her anxiety.

Mary received the required bowel preparation of four litres of fluid the day before her procedure, while an inpatient and the colonoscopy proceeded as planned. The hysteroscopy was abandoned due to the investigation finding Mary had cervical stenosis.

Mary was discharged on the planned day without any complications and received routine follow-up care. According to disability staff, Mary had no escalation of mental health problems as a result of the hospital admission and procedures.

Additional information

• The discussion about Mary’s experience of hospital and discharge highlighted how knowing the likely time of medical rounds, enabled support staff to be involved in the bedside discussion and has reduced the number of patient complaints and the complexity of case conferences. However it was also noted, the support worker at the bedside may not necessarily have the skills to understand or value of the information and communication which occurs with the team.
• There is a need to have written information also, to assist the relay of information. There were many examples of health staff misunderstanding the role, training and skill level of the support worker and the model of care in operation at the supported accommodation. Health staff often assume nursing knowledge is understood by support staff and that group homes are a clinical environment.
• In Mary’s case, the risk screening at pre-admission and discharge care planning was enhanced by the supported accommodation having a team leader who was also a registered nurse, who understood the health system and the clinical issues.
• There is also a need to consider the person responsible, carer and any guardianship issues.