Isr J Psychiatry Relat Sci Vol 43 No. 4 (2006) 252–257

A 10-Year Review of a Model for Mental Health Care of People with Intellectual Disability

Henry Kwok

Psychiatric Unit for Learning Disabilities, , Hong Kong.

Abstract: Following the movement from institutionalization to community care, there has been a transformation of services for people with intellectual disability over the past few decades. Kwai Chung Hospital in Hong Kong is a pio- neer in Asia that took the initiative of improving the mental health care for this underserved population by setting up a specialist unit called the Psychiatric Unit for Learning Difficulties (PULD) 10 years ago. This new service was estab- lished through re-engineering of existing resources and re-distribution of manpower within the psychiatric hospital. This paper reviews the work of PULD and examines its achievements. By sharing the experiences of PULD, it is hoped that health providers currently without such a specialist service can make similar reforms to enhance their provisions for people with intellectual disability and mental health problems.

Introduction length of stay was remarkably long and some had been in the hospital for over 10 years Hong Kong is a city in the southern part of China. It without any discharge plans. has a gross area of 1,098 square km and a total popu- lation of about 7 million. Over 95% of the citizens are The need for specialized psychiatric services Chinese. According to government statistics, the Literature has consistently shown that psychiatric number of people with intellectual disability (ID) in disorders are more prevalent in adults with ID than Hong Kong is approximately 62,000 to 87,000 in the general population (2) and they do experience 2001, which represented a prevalence rate of about the full range of mental disorders (3, 4). However, 0.9 to 1.3 % (1). until recently, the area of mental health and chal- Kwai Chung Hospital (KCH) is one of the two lenging behaviors in people with ID rarely received major psychiatric in Hong Kong. It was the attention of psychiatrists and health administra- opened in October 1981 and initially comprised a tors. Appropriate services are often lacking in avail- total of 1,622 beds distributed over 34 wards. In line ability, accessibility and adequacy (5). with the global de-institutionalization process and There are many studies showing that generic community approach to mental health care, the hos- adult psychiatric services cannot satisfactorily meet pital gradually reduced its beds to 1,272 by 2005. thetreatmentandcareneedsofpeoplewithIDand KCH has four psychiatric outpatient clinics located psychiatric or behavioral problems (6, 7). This is es- in its catchment area and, together with its inpatient pecially true when this group requires inpatient care. facilities, currently provides a comprehensive psy- Thestaffingenericwardsmaynothavetheneces- chiatric service to a population of about two million sary skills and training to handle them (8). Special people. expertise is required for the proper assessment, accu- An unpublished hospital survey conducted in rate diagnosis and appropriate treatment. These in- mid-1995 found that there were 158 patients with ID dividuals may have difficulties in getting on with in KCH. The ratio of males to females was 3:2 and otherpatientswithmentaldisordersingeneric their mean age was 35.5 years. They accounted for wards, and are vulnerable and generally disadvan- about 10% of the total inpatient population at that taged in such settings. On the other hand, the physi- time and were under the care of different general cal environment of the ward should be modified adult psychiatric teams in different wards. Their with extra facilities to meet their special needs (9).

Address for Correspondence: Henry Kwok, Psychiatric Unit for Learning Disabilities, Kwai Chung Hospital, 3-15 Kwai Chung Hospital Road, , Hong Kong, China. E-mail: [email protected] HENRY KWOK 253

Currently, there is still a lack of research studies with Service Provision good methodology to compare the effectiveness of specialist units with general adult mental health Inpatient service units. However, as pointed out by Clements, special- Two general adult psychiatric wards were trans- ized services increase staff competence and skills, formed into specialist wards. Funding was sought bring benefits of cumulative experience, accept from the hospital management to renovate these responsibity for the care of the ID patients without areas and equip the wards with extra facilities such as allowing them to fall in to service gaps, and increase a time-out room, a domestic training room, a small the probability of successful treatment (10). This school and a model home. The model home is a supports the findings of a recent study which dem- room with two beds where many home furnishings onstrated that patients with ID and mental health and appliances (e.g., iron, vacuum cleaner, etc.) are problems who were admitted to a specialist inpatient available. Patients assigned to this room are expected unit showed significant improvements on measures to look after themselves with less supervision from including psychopathology and overall level of func- ward staff. Suitable patients are usually those in the tioning (11). mild grade ID range at the stage of pre-discharge. Each ward consisted of 45 beds. This made up a total Establishment of PULD of 90 beds for the inpatient service. It is beyond the scope of this paper to describe in de- Thebedsineachwardareclassifiedintothree tail how the service was developed. Readers are re- types: long-stay, short-stay (less than three months) ferred to an article published earlier for more and respite care. Apart from internal referrals from information (9) and only a brief account will be pre- within the hospital, patients can also be admitted sentedhere.Inessence,acommitteewasformedin through the outpatient psychiatric clinics and emer- late 1995 to deal with the logistic, administrative, po- gency departments of general hospitals within the litical and clinical issues involved in setting up such a catchment area. specialist psychiatric unit in KCH. The service had to be run using existing staff from two general adult Outpatient clinic psychiatric wards. This was made possible by re-en- Patients discharged from the inpatient unit are fol- gineering, redeployment and redistribution of du- lowed up by psychiatrists of PULD at this clinic. Be- ties. The Unit was officially named the Psychiatric sides, it also takes over other outpatients with ID Unit for Learning Disabilities (PULD). who are under the care of general adult psychiatrists. The mission of PULD is to meet the mental Referrals are accepted from a wide range of sources, healthneedsofpeoplewithIDbyprovidingahigh- including general practitioners, social services, quality, coordinated and comprehensive psychiatric courts and probation officers. The clinic also helps service that incorporates the principles of normal- the Social Welfare Department to evaluate the eligi- ization and integration. The Unit also aims to de- bility of individuals for a social security allowance on velop the abilities of each individual and medical grounds. widen their repertoire of skills. A logo was designed in the shape of a rocket and the Unit’s slogan is “over- Outreach service coming hurdles and maximizing potentials.” The outreach service supports carers and organiza- The target clients include people with ID over the tions providing services to people with ID in the age of 16 years with superimposed mental illness, community. Through outreach to homes, hostels, challenging behaviors, forensic and any other mental day activity centers and sheltered workshops, clients health problems. The staff mix consists of psychia- areseenatthesiteswheretheyliveandworkbythe trists, psychiatric nurses, clinical psychologist, occu- multidisciplinary team. More information can be pational therapist, social worker and health care gathered from various staff members about behav- assistants. Other forms of professional support such ior, functioning and social relationships, facilitating as dental care, dietetic service and physiotherapy are both assessment and diagnosis. Advice can also be also available by referral. provided to staff on the spot and treatment proce- 254 HONG KONG MODEL FOR MENTAL HEALTH CARE OF PEOPLE WITH INTELLECTUAL DISABILITY dures such as behavioral modification programs can Center of PULD on a monthly basis so that assess- be implemented more successfully. In addition, this ment, treatment and follow-up can be provided for service brings convenience to the organizations the whole group of clients coming from the same sincetheycansavetheeffortofescortingtheircli- agency. This will save the traveling time of the staff, ents to outpatient clinics for follow-up. but still allows good and direct communication with the carers. Respite service b) At the outpatient department, a Guardianship The aim of the respite service is to provide a break Clinic has been set up specifically to provide two and relief for carers, to help reduce family stress, and medical reports on people with ID applying for to improve the well-being of carers (9). People with guardianship. These reports will then be forwarded challenging behaviors or mental illness often face to the Guardianship Board for hearings in accor- difficulties in finding a respite in centers run by so- dance with the Mental Health Ordinance. Guardian- cial services and the provision of such a service by ship helps to resolve conflict between the family of the PULD helps to bridge this service gap. During the person with ID and service providers, and also to this time, the Unit not only provides accommoda- protect him or her against abuse, whether financial tion but also some positive experiences for them. or emotional, and to facilitate treatment for serious They may join any ward activities and training pro- physical disorders (12). grams whenever appropriate. Furthermore, respite is also an opportunity for screening physical or mental c) Snoezelen is a form of complementary therapy health problems. The respite care period can last for that is becoming increasingly popular in the field of up to one month. intellectual disability. The concept is that it provides an opportunity to improve the client’s mental well- being through the use of appropriate sensory stimu- Progress Over 10 Years lation (13). Sessions are conducted weekly by an oc- 1. Increase in facilities cupational therapist, nurses and clinical psychologist Donations and funding had been applied for from and feedback will be provided to the carers at the end the hospital and other sources to build a Motion of each course. World, set up a Resource Center, create a Domestic Training Room and purchase various computer hard 4. Statistics ware and software. Table 1 shows the service output of PULD over the past 10 years. There was a remarkable growth in all 2. Increase in manpower community-based services. In particular, the total There was an addition of one part-time psychiatrist attendance at the outpatient clinic of PULD in- trainee and one nurse specialist since the opening of creased by 2.5 times while the attendance under out- PULD. A community psychiatric nurse has also been reach leapt by more than four fold. designated to attend the regular ward rounds and The demographic and clinical data of patients meetings. The staff-mix of the PULD is multi-disci- under the care of PULD are shown in Table 2. Au- plinary and each has its role to play in the care of in- tism spectrum disorders was the commonest psychi- dividual patients. atric diagnosis, whereas schizophrenia and other non-organic psychosis ranked the second. 3. Increase in service elements a) In view of the heavy demand from non-govern- 5. Training and research ment organizations for outreach services, an alterna- PULD is a recognized training center accredited by tive service has been designed to cater for the both the Royal College of Psychiatrists of the UK and specific needs of these hostels, group homes and the Hong Kong College of Psychiatrists. Although it sheltered workshops. Instead of the team members is not an academic unit, it has conducted a number traveling to these places to provide consultations, of research studies, either on its own or in collabora- specific clinical sessions are arranged at the Resource tion with university departments. The staff of PULD HENRY KWOK 255 are also very active in teaching and have run many ences and shared their service experiences and re- training workshops for service providers, families search findings with other professional workers in and students over the 10-year period. The Unit has this field. participated in both local and international confer-

Table 1. Service output of Psychiatric Unit for Learning Difficulties

Year 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005

Inpatient service Total Admission 163 104 120 92 95 115 94 123 125 135 Total Discharge 34 90 109 97 91 105 92 117 122 127

Outpatient Department Total attendance 598 979 1,172 1,415 1,409 1,444 1,250 1,624 1,686 1,5 97

Outreach Total attendance 136 310 398 428 408 490 486 469 530 584

Respite service 8191515102320142922

Community Partnership Clinic Total attendance 169 201 227 278 284

Table 2. Demographic and clinical data of patients under PULD SEX Male 55 % Female 45%

AGE (years) 16–24 12.5% 25–34 30% 35–44 31% 45–54 16.5% 55–64 7% >64 3%

GRADE of ID Mild 46% Moderate 40% Severe/Profound 10% Borderline 1% No grading 3%

PSYCHIATRIC Autism spectrum disorder 36% DIAGNOSIS Schizophrenia and other non-organic psychosis 32% No psychiatric disorder 10% Personality disorder 8% Organic mental disorder 5% Miscellaneous (neurotic, adjustment, dementia, etc.) 9% 256 HONG KONG MODEL FOR MENTAL HEALTH CARE OF PEOPLE WITH INTELLECTUAL DISABILITY

Discussion ID under psychiatric care. Its advantage is that it does not require the injection of huge resources, but Mental health problems and challenging behaviors at the same time allows a balanced coverage of both are common in people with intellectual disability. inpatient and community services, offers a high de- These conditions not only impair their functioning, gree of flexibility in supporting people with ID and quality of life and personal independence, but also mental health needs, and enables the build up of staff disrupt their training and rehabilitation programs, expertise. However, the lack of specialist staff, partic- escalate carer stress and hinder the progress towards ularly psychiatric, is a major barrier to the starting participation and inclusion. They are a major cause and development of such services (14). of breakdown in community care and return to institutionalization. Therefore, it is necessary for health policy planners to recognize the importance References of this co-morbidity in people with ID and take ini- 1. Census and Statistical Department. Special topics Re- tiatives to develop appropriate and adequate services port No. 28 — Persons with disabilities and chronic for them. diseases. Hong Kong: Hong Kong SAR Government, PULD is the first specialist unit of this kind in 2001. Hong Kong. The Unit started with inpatient service 2. Deb S, Thomas M, Bright C. Mental disorder in adults by conversion of two general adult psychiatric wards with intellectual disability: Prevalence of functional into specialist wards in the grounds of a psychiatric psychiatric illness among a community-based popula- hospital. Subsequently, a wide range of services was tion aged between 16 and 64 years. J Intellect Disabil Res 2000;45:495–505. developed to meet the complex mental health needs 3. Bregman JD. Current developments in the understand- of people with ID in the community. Over the period ing of mental retardation Part II: Psychopathology. J of 10 years, staff of the multi-disciplinary team has Am Acad Child Adolesc Psychiatry 1991;30:861–872. gained tremendous experience in the assessment, di- 4. Holland AJ. Psychiatry and mental retardation. Int Rev agnosis and treatment of psychiatric and behavioral Psychiatry 1999;11:76–82. problemsofpeople(adults)withID.TheUnithas 5. Bouras N, Geraldine H. Editorial: Mental health ser- been proved to be effective in discharging some of vices for adults with learning disabilities. Br J Psychia- the patients with a high level of disturbance and re- try 2004;184:291–292. settling them successfully in the community. As 6. EmersonE,ToogoodA,MansellJ,BarrettS&BellC. Challenging behaviour and community services: Intro- moreandmorelong-staypatientshavebeendis- duction and overview. Mental Handicap 1987;15:166– charged, some long-stay beds are converted to the 169. short-stay category. Similarly, with decreasing bed 7. Day K. Mental health services for people with mental occupancy rate and increasing demand for commu- retardation: A framework for the future. J Intellect nity mental health care, it is expected that some of Disabil Res 1993;37:7–16. the staff working in the inpatient unit may have to 8. Bouras N, Holt G. Community mental health services shifttoworkinthecommunitysettinginthenearfu- for adults with learning disabilities. In: Thornicroft G, Szmukler G, editors, Textbook of Community Psychia- ture. try. London: Oxford University, 2001:397–407. Although the current evidence for the best orga- 9. Kwok H. Development of a specialized psychiatric ser- nization and delivery of mental health care for peo- vice for people with learning disabilities and mental ple with ID is still inconclusive and inconsistent (5), health problems: Report of a project from Kwai Chung the development of a specialist unit, whether hospi- Hospital, Hong Kong. Br J Learning Disabilities 2001; tal-based or community-based, definitely provides a 29:22–25. positive way forward. The 10 years of experience of 10. Clements J. Units and teams: Challenges in common. PULD indicates that this is a feasible and successful Mental Handicap 1987;19:113–119. 11. Xenitidis, K,Gratsa A, Bouras N, Hammond R, modelthatcanbringbenefitstopeoplewithID, DitchfieldH,HoltG,MartinJ,BrooksD.Psychiatric their families, service providers and the hospital. inpatient care for adults with intellectual disabilities: This model can be applicable to those centers where Generic or specialist units? J Intellect Disabil Res 2004; there are already a substantial group of patients with 48:11–18. HENRY KWOK 257

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