From Institutional to Community Support:
Consequences for Medical Care

Abstract

Concerns have been raised about the quality of medical care available for people with intellectual disabilities in community-based services. The aims of this study were to evaluate a model of medical care developed during a programme of deinstitutionalization, based on a specialist physician supporting general practitioners (GPs). 
A postal questionnaire survey was done among all 36 GPs participating in the specialist physician support programme. Responses were received from 22 participants (response rate 61%).
The majority of GPs agreed that clients with intellectual disabilities should receive services in primary care settings. While they reported themselves to be capable of providing medical care to people with intellectual disabilities, they also reported the provision of specialist support to be important.
The conclusion can be that is it is possible to provide high quality medical care in community-based settings if specialist support is made available for GPs.

Introduction

In recent years a number of concerns have been raised in the Netherlands regarding the process and outcomes of deinstitutionalization (van Gennep, 2003). These include concerns about the quality of medical care available for people with intellectual disabilities in community-based settings (e.g. Lennox, Diggens & Ugoni,1997; Evenhuis, 2002; Phillips, et al., 2004). Below, we will discuss three themes: the importance of medical care for people with intellectual disabilities in general; the provision of medical care in community-based settings; and mortality rates following deinstitutionalization.
It is becoming increasingly clear that people with intellectual disabilities have a higher rate of illness than the general population. The special health needs of this population may be linked to their disability, difficulty in diagnosis, atypical presentation, unhealthy lifestyles and poor health promotion (e.g., Bailey & Cooper, 1997; Bond et al. 1997; Evenhuis, 2002). For example, Jansen et al. (2004), found in their review of international literature involving comparative research using a control group of individuals without intellectual disabilities, that most studies reported higher prevalence rates of epilepsy, diseases of the skin, sensory loss and (increased risk of) fractures among people with intellectual disabilities.
Several authors have discussed the importance and difficulties of providing community-based health care for people with intellectual disabilities (e.g., Rodgers,1994; Lennox et al., 1997; Bond et al., 1997; Evenhuis, 2002; Phillips et al., 2004). In Australia and elsewhere deinstitutionalization has resulted in the primary health care of people with intellectual disabilities being placed in the hands of general practitioners (GPs) (Lennox et al., 1997). However, studies assessing the medical care of people with intellectual disabilities by GPs have reported significant shortcomings in that people with intellectual disabilities may suffer from an excessive number of unrecognized or poorly managed medical conditions, and receive inadequate health screening and preventive care.  For example, Lennox et al. (1997) reported that the five main obstacles to providing good medical care mentioned in a survey of GPs in Australia were: communication difficulties in understanding and obtaining information from the patient; problems with history taking; lack of compliance with the general practitioner’s management plan; lack of knowledge of conditions or illnesses common in people with intellectual disabilities; and consultation time constraints. The typical GP was, according to Lennox et al., likely to be extremely inexperienced in this area of health care.
In England and Wales, many people with intellectual disabilities have access to specialised Community Teams, which have specific skills and experience in supporting them (Bond et al., 1997). Effective collaboration between primary health care teams and Community Teams provides one way forward in providing integrated and high-quality care for people with intellectual disabilities. However, Rodgers (1994) suggests that such collaboration has not been happening, partly due to primary health care teams not being aware of Community Teams and the support they can provide.
Until recently in the Netherlands, GPs supported approximately 1-2 children and 5 adults with intellectual disabilities in their practice. As such, they had little experience in diagnosing the cause of intellectual disabilities, syndrome-specific deficiencies, sensory deficiencies, epilepsy, the high risk of reflux of the content of the stomach, psychiatric and behavioural problems, and controlling anticonvulsants and psychopharmacological drugs (Evenhuis, 2002). Nevertheless, the Council for Health Care in the Netherlands argued that shortcomings in the health care system for people with intellectual disabilities must not stand in the way of moving them into community care (Evenhuis, 2002).
As Evenhuis (2002) states, the mortality rate of people with intellectual disabilities is considerably higher than that of the general population. There is conflicting evidence of the impact of deinstitutionalization or type of accommodation on mortality among people with intellectual disabilities. Several studies have reported higher mortality rates in institutional settings (e.g., Hayden,1998; Conroy & Adler,1998), some have reported no difference between institutional and community settings (e.g., Miller & Eyman, 1978; O’Brien & Zaharia, 1998), others have reported higher mortality rates in the community (e.g., Straus & Kastner, 1996). Variations in results between studies may reflect a number of factors including methodological soundness and incomplete reporting (cf., Decoufle, Hollowell & Flanders, 1998; Hayden, 1998). More recently, Lerman et al.(2003) compared mortality among 150 residents who were moved out of an institution with an identical group of 150 residents who stayed on. The evidence from this study clearly indicates that being moved or staying in one place did not account for differentials in the death rate.
Moreover, even if there is increased mortality or morbidity among people in community care, attention should be focussed on identifying the proximal risk factors that contribute to this increase and they should be addressed through the development of appropriate preventive measures. Denying people with intellectual disabilities the opportunity to live outside institutions is not the only preventive measure. Hayden (1998) states that such research only looks at life as a statistic with death as the outcome. No consideration is given to other aspects, such as quality of life; personal preferences in life styles; personal choices; the degree to which people are willing, and entitled, to take risks; the basic right to freedom of movement; the quality of medical care and treatment in institutions and in the community; and the relation between medical care/treatment and mortality.
This study describes the reorganization of medical care for people with intellectual disabilities following a period of deinstitutionalization in the Netherlands. We then present the results of a survey of GPs who are responsible for providing medical care in community settings to people with intellectual disabilities. The survey collected information on:

Method

The Context: Medical care in Arduin

Arduin is a Dutch organization providing care for people with intellectual disabilities. Within this organization, inclusion, emancipation and self-determination are considered to be fundamental to secure the best possible quality of life for people with intellectual disabilities. As a result, Vijvervreugd, an institution in the town of Middelburg, was closed. The 360 former residents were resettled over a wide area in Zeeland and now live in more than 105 houses in 19 different villages and towns (van Loon & Van Hove, 2001).
One of the consequences of deinstitutionalization was that the former function of the ‘institutional physician’ had to fundamentally change. To have one single medical practitioner looking after all the ex-residents was logistically impossible. In addition, such an arrangement would run counter ideas of inclusion. However, Arduin remained, under Dutch legislation, responsible for providing appropriate health care to all its 24-hours clients, who included people with a wide range, variety and intensity of support needs.
As a result, the approach taken to health care was re-organized. All clients now have their own GP who provide primary health care on an individual basis. These 36 GPs are contracted by Arduin and paid by Arduin for their services. In addition, Arduin employs a registered AVG, (a physician specialised in the care of people with intellectual disabilities) who can be consulted or called in by the local GPs. The Arduin AVG, by virtue of his responsibilities, has the medical notes of each client at his disposal. An agreement has been reached between the local GPs and the AVG about the allocation of responsibilities. In broad terms, the GP is responsible for treatment of acute and everyday medical matters, while the AVG provides additional support for more complicated matters such as psychiatric problems and challenging behaviour, nutritional disorders and epilepsy. Essentially, the role of the AVG is to give support and guidance to the staff and, if applicable, the parents of the Arduin clients. They can also call upon other Arduin experts, such as psychologists, orthopedagogues, speech therapists and physiotherapists (an orthopedagogue is an academic in the field of special education, who in the Netherlands often has a responsibility in support and treatment of people with intellectual disabilities). The responsibilities of the AVG are described in detail in Table 7.1.

Table 7.1: Summary of the areas assigned to the physician for people with intellectual disabilities

This system was developed following extensive consultation between Arduin, the AVG and the local District General Practitioners Association and the Dutch Association for Care of the Disabled. Given the geographical spread of the houses, most GPs are responsible for just one or two houses supporting Arduin clients. All Arduin medical files were copied for the AVG and then transferred to the relevant GP. Each client has an information card recording all essential information they need for support, including procedures for obtaining emergency medication. For clients who could possibly pose a threat there is a legal foundation, so that lawful and decisive action can be taken in case of emergency. In addition to support provided by the AVG, additional support provided by Arduin includes 24-hour on call support, website, intranet, e-mail and mobile phone support.
The closure of the institute also necessitated fundamental changes in the way medicines were dispensed: the institute’s pharmacy had to be closed down. A step-by-step plan was drawn up together with the then pharmacist at the institute. First a procedure to safely dispense medicines to the houses was put in place. It was agreed that GPs in rural areas who had a pharmacy in-house would dispense the medicines themselves. Otherwise, medicines would be dispensed from two local pharmacies.

The survey

As noted above, we undertook a postal survey among the GPs involved in this project. The survey included the following questions:

The majority of the questions involved the use of a 5-point rating scale, with room for participants to add comments, should they wish to do so. Finally, the questions about conditions and difficulties were put in the form of open questions. 
This questionnaire, with a stamped addressed envelope, was sent to all 36 GPs supporting Arduin clients in their practice. After the closing date, we sent out an e-mail requesting those who hadn’t replied to still respond.

Results

Out of the 36 questionnaires sent out, 22 were returned. The results are described below.

Do you believe that people with intellectual disabilities have the right to register as a patient in a normal GP practice?
On a 5-point scale from ‘absolutely right’ to ‘absolutely not right’, most GPs find it is absolutely right (five GPs) or right (13 GPs) that people with intellectual disabilities register as a patient in a normal GP practice. Two GPs do not think it is right and two have no opinion. Open ended comments included: people with intellectual disabilities have as much right as everyone else; that part of integrating in the community is to have as normal a contact with the local GP as possible; but also that they must be entitled to have direct access to a physician who has specialist knowledge about their specific problem(s); that GPs should have the choice whether to register these patients or not.

Do you think it’s pleasant to count clients of Arduin among the patients in your practice?
On a 5-point scale from ‘extremely pleasant’ to ‘extremely unpleasant’, most GPs are extremely pleasant (five GPs) or pleasant (nine GPs) to count Arduin clients among the patients in their practice. Six GPs have no opinion and two reported it was not pleasant to do so. Open ended comments included: that it is an enrichment of the current practice population and part of the diversity of the profession of a GP; it is a special challenge to establish a good personal relationship as well as a professional one. One GP said he made a conscious choice and had not regretted it for a second. 
 
Do you consider yourself, as GP, to be adequately equipped to provide primary health care to people with intellectual disabilities? 
On a 5-point scale from ‘more than adequately’ to ‘far less than adequately’, the GPs consider themselves to be more than adequately (two GPs) to adequately (17 GPs) equipped to provide primary health care to people with intellectual disabilities. Three GPs consider themselves not adequately equipped.

What is the nature, in general, of the problems you are consulted about as GP by /for the clients of Arduin?
Table 7.2 presents information on which problems the GPs are consulted about by or for clients of Arduin and how often.

Table 7.2: Nature and frequence of the problems GPs are consulted about by/for Arduin clients

Generally speaking, are you in favour of having AVG support?
On a 5-point scale from ‘very important’ to ‘absolutely unimportant’, AVG support was reported to be very important (10 GPs) to important (11 GPs). Just one GP had no opinion on this issue.
The areas the GPs reported the AVG to be essential, and to which degree, is reported in Table 7.3.

Table 7.3: The areas in which the GPs think support from the AVG is important, and to what degree

What sort of difficulties can you envisage with the clients of Arduin in your practice?
Issues raised by GPs included: their own lack of specific knowledge about epilepsy and behavioural problems; difficulty in obtaining a full medical history when clients were transferred from one GP to another; lack of knowledge and information among support workers; need for a better documentation system is mentioned; difficulties in contacting the AVG; clients leading sedentary lifestyles. Several GPs mentioned having no difficulties.

Which conditions should, in your opinion, be met to enable a GP to provide proper care to clients of an AWBZ-organization such as Arduin?
Conditions included: sufficient and properly qualified nursing staff; good pedagogic support that the client can fall back on 24 hours a day; an AVG physician who is easy to get in contact with; good background information; well informed escort (preferably the same personal) to be present at consultation/visit; clear reporting of (medical) problem/symptoms. One GP wrote that in his opinion, care by a specialist is preferable and of higher quality: the idea to separate GP care and specialist care promotes segmentation.

What is your general opinion about the overall quality of the medical care the clients of Arduin receive?   With overall quality we mean the 1st and 2nd line care, in cooperation with the Arduin organization, in its entirety.
On a 5-point scale from ‘excellent’ to ‘very poor’, the general verdict of the GP’s about the overall quality of the medical care given to Arduin clients was: excellent (one GP), good (11 GP’s), normal (nine GP’s), between normal and poor (one GP).

Discussion

The results of the survey indicate that: (1) GPs rated the overall quality of the medical care provided to Arduin clients to range from very good to normal; (2) participating GPs are generally supportive of the idea that people with intellectual disabilities should be a patient in a normal GP practice; (3) they perceive themselves adequately equipped to provide primary medical care to people with intellectual disabilities; but (4) regard as important the availability of external expert advice, in this case from the AVG.
These findings are generally consistent with those of previous studies, which have also reported general support for the involvement of GPs in providing medical care to people with intellectual disabilities (e.g., Bond et al., 1997). They are also consistent with the existing literature in highlighting the need for GPs to have access to additional expert input (e.g., from an AVG or Community Team), especially in the areas of: aetiology, behavioural and psychiatric problems, epilepsy, locomotory disorders, nutritional and eating disorders, sensory disorders, specific syndromes, staff support, sexuality, preventative interventions, consultation with family and close relations and intermediary between GP and organization (see also Bond et al., 1997; Evenhuis, 2002; Lennox et al., 1997; Phillips et al., 2004).
In general these results are consistent with the view that physicians specialised in the field of intellectual disabilities can play a crucial part in a modern community-based health care system for people with intellectual disabilities (Evenhuis, 2002). In addition, the results identified a number of additional factors that were considered important for the delivery of good primary care. These included: 24-hour access to orthopedagogues and coaches (to include a nurse); well-informed escorts; and good communication and information systems (such as arrangements, procedures and reporting, including a medical section in the individual support plan and medical information at intake). These add to the conditions identified by Lennox et al. (1997): education and training opportunities to learn more about intellectual disabilities; increases in consultation time and to involve family or care providers in the consultation and subsequent management of the patient; the development of a management that is understood and implemented.
The main limitation of this study lies in its use of a relatively small sample drawn from one location. It remains in question whether the results would be the same in an other, perhaps more urban region, of the Netherlands, than in this rather rural region. In addition, the response rate in the study was relatively low, probably due to the high workload of GPs in the Netherlands in general.
We did conclude, however, that it is possible to provide high quality medical care to people with intellectual disabilities in community settings if specialist support for the handicap-related problems is well organized.

References

Bailey N.M. and Cooper S.-A., (1997) The current provision of specialist health services to people   with learning disabilities in England and Wales. Journal of Intellectual Disability Research 41 part I pp-52-59.

Bond L., Kerr M., Dunstan F., & Thapar A. (1997) Attitudes of general practitioners towards health care for people with intellectual disability and the factors underlying these attitudes. solutions Journal of Intellectual Disability Research 41 part 5,  pp 391-400.

Conroy, J.W. and Adler, M. (1998). Mortality Among Pennhurst Class Members, 1978 to 1989 Mental Retardation, 36, 380-385.

Decoufle, P., Hollowell, J. and Flanders, W. (1998). Is Community Placement an Independent Risk Factor for Increased Mortality? Comments on two recent Reports. Mental Retardation,  36, 403-405.

Evenhuis, H.M. (2002) Want ik wil nog leven. Moderne gezondheidszorg voor mensen met verstandelijke beperkingen. Zoetermeer: Raad voor de Volksgezondheid en Zorg.

Gennep, A. van (2003) De tweedeling. Verstandelijke handicap tussen wetenschap en samenleving. In: Ad van Gennep, Geert Van Hove, Jos van Loon. Voor & Tegen. Vernieuwingen in de zorg voor mensen met een verstandelijke handicap. Antwerpen / Apeldoorn: Garant.

Hayden, Mary F.  Mortality Among People With Mental Retardation Living in the United States : Research Overview and Policy Application Mental Retardation, Vol. 26, No. 5, 345-359, October 1998

Jansen, D.E.M.C., Krol, B., Groothoff, J.W. & Post, D. (2004). People with intellectual disability and their health problems: a review of comparative studies. Journal of Intellectual Disability Research, 48, 93-102.

Lennox N.G., Diggens J.N. and Ugoni A.M., (1997) The general practice care of people with intellectual disability: barriers and solutions Journal of Intellectual Disability Research 41 part 5,  pp 380-390.

Lerman, P., Apgar, D.H. and Jordan, T. (2003). Deinstitutionalization and mortality. Mental Retardation, 41, 225-236.
Miller, C., & Eyman, R. (1978). Hospital and community mortality rates among the retarded. Journal of Mental Deficiency Research, 22, 137 – 145.

O’Brien, K. F. and Zaharia, E.S. (1998). Recent Mortality Patterns in California. Mental Retardation, 36, 372-379.

Phillips, A. Morrison J. & Davis, R.W. (2004). General practitioners’ educational needs in intellectual disability health. Journal of Intellectual Disability Research, 48, 142-149.

Rodgers J.(1994) Primary health care provision for people with learning difficulties. Health and Social care in the Community 2, 11-17.

Straus, D., & Kastner, T.A. (1996). Comparative mortality of people with developmental disabilities in institutions and the community. American Journal on Mental Reatardation, 101, 26-40

Van Loon J. & Van Hove, G. (2001). Emancipation and self-determination of people with learning disabilities and down-sizing institutional care, Disability & Society, 16 (2), p. 233-254.