Susie Case Scenario

SusieINTRODUCTION TO SUSIE, HER HOME AND HOUSEMATES

Xiwang Lee, known as Susie, is a young woman of 24 years who shares her home, on a quiet leafy street in the Sydney suburb of Everglade, with three others. Susie and her housemates, Michael (22), Ali (27), and Eva (25) are all:

  • non-verbal
  • have significant intellectual disability
  • physical disabilities and
  • complex health conditions

Susie and Ali depend always on wheelchairs for mobility. Michael and Eva are able to walk slowly around the house. They can also walk short distances with some support if out. However, they require wheelchairs for longer distances.

Susie, Ali, Michael, and Eva all have high support needs and require assistance with all activities of daily living (ADLs).

Their house is attractive and comfortable, and accessible for all residents. Mobility and lifting equipment is available to meet the needs of residents and staff. They all have their own bedrooms which are decorated individually. There are two bathrooms with a spa bath in one. The kitchen is modern and spacious with plenty of storage.

Susie and her housemates attend a community day program five days a week (10am-3pm), where she enjoys art and music. Susie loves to go swimming at the local aquatic centre once a week with Michael and two Support Workers (SW). On weekends, staff members sometimes take clients out or arrange special activities at home. Depending on staffing levels, outings can be difficult as the house has one vehicle which accommodates only three people in wheelchairs.

Susie is a much loved daughter and sister and has regular contact with her family. Her parents are busy with their small business on the other side of Sydney, and her brother has a family and a demanding dental practice in Wollongong. Her parents, now in their early 60s, are finding it increasingly difficult to take Susie home for weekends but one of them usually manages to visit her most weekends. Susie enjoys these visits, particularly the familiar Chinese food they bring for her.

SERVICE

Susie’s home is operated by Metropolitan Disability Services, a non-government organisation (NGO) funded by Ageing, Disability and Home Care (ADHC).

Staffing usually consists of:

 

WEEK DAYS

WEEKENDS

6am – 11am

2 SWs

6am – 2.30pm

2 SWs

2pm – 10.30pm

1 SW

2pm – 10.30pm

1 SW

2.30pm – 8pm

1 SW

2pm – 8pm

2 SWs

5pm – 8pm

1 SW

10pm – 6.30am

1 SW

10pm – 6.30am

1 SW

 

 

 

 

 

 

SW = Support Worker

A Manager is responsible for daily operations in Susie’s house, along with two other houses in the area.

Due to the high and complex health needs of clients, Metropolitan Disability Services has a Health Team consisting of:

  • Clinical Nurse Consultant (CNC)

  • Registered Nurses (RN) – five

  • Physiotherapist

  • Speech Pathologist

  • Dietitian.

Members of this team are responsible for health-related assessment, health monitoring and management, and individual health plans for all clients of the service (40 clients in 10 houses). One RN works on weekends, and the CNC and RNs are on 24-hour rostered on-call duty.

BACKGROUND

Already in their 40s, Susie’s parents were delighted to learn that a new baby would join their family. Their son was 15 years old and they had given up hope of another child. The pregnancy was uneventful until 35 weeks, when Mrs. Lee fell down the back steps.

The next day Xiwang (meaning ‘hope’) was delivered by emergency caesarian. This was necessary because Mrs. Lee had a haemmorhage due to placental abruption (the placenta pulls away from the wall of the uterus causing loss of blood supply and oxygen to the foetus). The baby developed severe jaundice and seizures within a few days.

Before long, Susie was diagnosed with epilepsy and Cerebral palsy. She had very poor sucking capacity and feeding was slow and difficult. Her parents were advised that she would “do nothing” and not survive for long.

The Lees took Susie home where she was showered with love. Feeding remained difficult, but community nursing services and the family worked out ways to feed and care for Susie. Mrs. Lee has always felt guilty that her fall led to pregnancy problems and her daughter’s severe disability; she blames herself for not being more careful. However, she is very proud that her excellent care and good food enabled her daughter to live.

Although Susie is underweight, has bowel problems, and is prone to chest infections, the Lees have managed to keep Susie relatively healthy, despite her severe disabilities and vulnerable health.

Susie lived with her family until she was 22. She attended a school for children with disabilities not far from where she lived. For about eight years, the family used a respite service but always worried when Susie was away from them. Mrs. Lee was anxious about Susie’s eating and drinking because she often lost weight when in the care of others; when she came home, she would need building up “with good Chinese food”. On one occasion when in respite care, Susie became severely constipated and was admitted to hospital for treatment. She has been on a strict bowel management program since then.

From around the time Susie turned 18, the Lees, with much encouragement from their son, began searching for a permanent home for Susie. Although they did not want Susie to be away from them, their age was making it increasingly difficult to look after her and they needed considerable external assistance. They also recognised the need for Susie to have her own home, and wanted her to be settled before they died.

After much searching, the family was happy to find suitable accommodation and support for Susie. They are pleased that Metropolitan Disability Services provides a high level of health support. However, the Lees continue to worry about Susie’s health because her weight has gone down since moving out of home; she has also had two major chest infections requiring hospitalisation. They want her to keep enjoying food and do not want her to have a gastrostomy tube.

SUSIE’S HEALTH ISSUES

Medical Diagnoses

  • Cerebral palsy

  • Epilepsy

  • Osteoporosis

  • Gastro-oesophageal reflux disease (GORD)

  • Skeletal deformities – Scoliosis, chest deformity, hip dislocation

  • Lactose intolerance (mainly straight milk, but tolerates many milk products)

  • Intellectual disability

Threats to Health

Problem

Current

Risk

Dysphagia

X

 

Pain

 

X

Poor Peripheral circulation

X

 

Skin breakdown

 

X

Constipation

X

 

Bowel blockage

 

X

Periodontal (gum) disease

X

 

Aspiration

 

X

Chest infection

 

X

Lung disease

X

 

Nutritional risks – undernutrition, dehydration

 

X

Diarrhoea – related to milk intake (lactose intolerance), some medications (antibiotics)

 

X

Allergies

Nil known

Medications

  • Susie’s medications are pre-packed by the Pharmacist and given regularly by SWs.

  • PRN medications are administered by SWs according to Bowel Management Plan and Seizure Management Plan.

  • PRN Panadol is administered by SWs following advice from Registered Nurse.

 

Medication

Dose

Route

Frequency

Intended Action

REGULAR MEDICATION

Pariet

20 mg

Oral

Twice daily (bd)

Reduce acidity in the stomach

Tegretol

200 mg

Oral

Twice daily (bd)

Reduce seizures

Ostelin

1000 IU

Oral

Daily

Increase available Vitamin D

Calcium carbonate

1250 mg

Oral

Daily

Promote healthy bones

Movicol

1 sachet

Oral

Twice daily (bd)

Promote bowel motions

Motilium

5 mg

Oral

Three times daily (tds)

Reduce gas

Mintec

0.2ml

Oral

Twice daily (bd)

Reduce gas

Acidophilus

1 tablet

Oral

Twice daily (bd)

Regulate intestinal flora

PRN MEDICATION

Panadol

500-1000 mg

Oral

Up to four times a day (qid)

Reduce pain or fever

Midazolam

2.5 mg

Buccal

Stat dose. Repeat after 10 mins.

Stop status epilepticus (epileptic seizures)

Glycerine suppository

1 supp

Rectal

In the evening (nocte)

Promote bowel motions

Microlax enema

1 enema

Rectal

In the evening (nocte) – day 2

Evacuate bowel

Data to be Used in Lessons

Weight: 38kg

Length: 142cm

Susie has the following plans in the Case Scenarios section of the package: