Medication submission - id protectlatest2

Submission to
Committee on Children and Young People
Inquiry into prescription and use of drugs and
medications in children and young people
This submission focuses on issues particular to children and young people
living in out-of-home care for reasons of care and protection or living in
residential care services for people with a disability.
September 2001
Contents
Executive Summary
The Community Services Commission
Community Services Commission’s functions.1 The Commission’s interest in the inquiry.1 Out-of-home care for children and young people in need of care andprotection.3 Residential services for children and young people with a disability.4 Decisions about medication
Administration of medication by non-parental caregivers
Administration practices in residential care . 11 Transferring information between caregivers . 14 Use of drugs and medication for management
purposes
Use of alcohol and tobacco by children and young
people in care
Systemic issues
The Way Forward
Conclusion
Glossary
Bibliography
Appendix 1: Unpublished Work
Executive Summary
This submission focuses on two particular groups of children and young people –those with a disability living in specialist disability accommodation services, andthose who are placed in out-of-home care for care and protection reasons. Thesechildren and young people face some specific risks and difficulties associated withthe use of prescription medication due to their circumstances and characteristics.
The submission draws on information gathered by the Community ServicesCommission through its various functions, and highlights the range of risksassociated with the prescription, administration and management of medication anddrugs for children and young people in care settings.
There are various elements of decision making around the use of prescriptionmedications that can be problematic, including obtaining appropriate medicalauthorisation and ensuring thorough review and monitoring of medical conditionsand the effect of prescribed medications. We have noted problems relating toobtaining consent for medical treatment, either due to an absence of policies andprocedures or simply poor service practices. In other cases, the unclear legal status ofchildren and young people, particularly those in voluntary care, creates problems inobtaining consent.
The circumstances of being in care poses some particular challenges in ensuringproper administration of prescription medication. Children and young people areunable to manage their own medication, and some care settings involve staff onshifts or changes of caregivers over time. Under these circumstances, accurate recordkeeping and documentation and clear arrangements for transferring informationabout medication between caregivers is critical to ensuring appropriateadministration of medication. Our work indicates that in some services there areproblems with the standard and consistency of documentation about medication andhealth issues; poor arrangements for the transfer of information about medication;and problems with the actual administration of prescription medication to childrenand young people.
Some children and young people in care settings have behaviours or physical needsthat may result in the use of medication for management, rather than treatment,purposes. Examples include the use of psychotropic / sedative medications tosuppress challenging behaviour, and the use of long-acting injectable medications tosuppress menstruation in young women with disabilities.
Some of problems surrounding the use of prescription medication for children andyoung people in care settings are linked to systemic or service-wide issues in thedisability services or out-of-home care system. We believe that these systemic issuesneed to be addressed in order to promote more appropriate use of prescription Inquiry into prescription and use of drugs and medications in children and young people medications for children and young people in care. Considerable improvements arerequired in the arrangements for overall health care management for children andyoung people in care settings, including the issue of access to specialist medicalassessments and treatment. We have previously recommended specific strategies forpromoting co-ordination of services needed to promote effective health caremanagement. We also identify some opportunities for improving the accountabilityand monitoring of medication use and medical treatment of children and youngpeople in care settings. The lack of continuity of care for children and young people,particularly those in the out-of-home care system, creates particular challenges inhealth care and medication management, as does the absence of any standardcompetency requirement for caregivers responsible for children and young people incare settings. Our submission suggests a number of areas where greater policy andpractice guidance, and options for promoting the development of staff competenciesare needed.
Inquiry into prescription and use of drugs and medications in children and young peopl 1. The Community Services Commission The Community Services Commission
1.1 Community Services Commission’s functions
The Community Services Commission (the Commission) is an independent statutoryauthority established under the Community Services (Complaints, Reviews andMonitoring) Act 1993 (CRAMA). The CRAMA provides the Commission with a rangeof functions aimed at promoting the rights of consumers of community services,including:• to review the situation of a person in care (S11);• to receive, resolve or investigate complaints in relation to unreasonable conduct of a community service provider (S12 & S23); • to inquire into matters affecting service providers and persons receiving, or eligible to receive, community services (S83); • to co-ordinate a state-wide Community Visitors scheme which monitors accommodation services, including those provided to people with disabilitiesand children in care (S9); and • to co-ordinate the Disability Death Review Team (DDRT) who monitor, review and inquire into the deaths of people with disabilities in residential centre. TheDDRT was established in 1998.
The Commission’s services are for consumers who are receiving or who are eligibleto receive community services provided by the NSW Departments of CommunityServices (DoCS), Ageing, Disability and Home Care (ADHC), and any other non-government services receiving funding from the Minister for Disability Services,Ageing and Community Services. The Commission’s target group therefore coverschildren and young people in need of care and protection and placed in out-of-homecare; and children and young people with disabilities who are provided residentialservices through government and non-government organisations. These consumerscan be especially vulnerable because of their age, capacity or personal circumstances.
1.2 The Commission’s interest in the inquiry
We are particularly concerned about two groups of children and young people –those placed in out-of-home care for care and protection reasons; and children andyoung people with a disability who are not living with their parents.
The views expressed in this submission have been developed following analysis ofinformation held by the Commission relating to the provision of services to childrenand young people. This includes information from published and unpublished Inquiry into prescription and use of drugs and medications in children and young people 1. The Community Services Commission investigations and inquiries, as well as unpublished work from other functionsincluding reviews of children in care; reviews of the deaths of children withdisabilities in disability accommodation services; complaints data; and reports fromCommunity Visitors (see Appendix 1 for more details).
The Commission’s work highlights the range of risks associated with theprescription, administration and management of medication and drugs, and, byassociation, concerns about overall health care for children and young people in care.
The aim of our submission is to inform the Parliamentary Committee for Childrenand Young People of the impact of these issues on this specific group of childrenwhose characteristics and circumstances increase their vulnerability to problemsassociated with the use of prescription medication.
Inquiry into prescription and use of drugs and medications in children and young people 2.1 Out-of-home care for children and young people in
need of care and protection
2.1.1 What is out-of-home care
Out-of-home care is the residential care and control of a child or young person whois not living with their family of origin. Out-of-home care services are provideddirectly by the government, through the Department of Community Services, as wellas by non-government agencies. Out-of-home care placements include foster careand residential care providing short and long term services, and are an integral partof the system providing care and protection for children who are unable to remainwith their own families for reasons of abuse or neglect.
At 30 June 2000 8,517 children aged between 0 and 17 years old were in care in NSW.
Of these children 2,145 were of Aboriginal or Torres Strait Islander background. Justover a third of all children were in care on a long-term basis (Department ofCommunity Services Annual Report 1999-2000). Eight per cent of wards wererecorded as having a disability (DoCS ISCD 2000 in Community ServicesCommission 2000a, pp.60).
The vast majority of children and young people are placed in family typearrangements, with 40.2 per cent with extended family or kin, 31.4 per cent in fostercare, and a further 10.8 per cent with non-related family. A smaller proportion ofchildren and young people (4.3 percent) are placed in non-family settings includingsupported accommodation, residential care and family group homes (Department ofCommunity Services 2000a).
2.1.2 Why this group requires special consideration in the context of this inquiry.
The Commission’s Inquiry into Substitute Care, conducted in 2000, found that thesubstitute care system is characterised by systemic and service delivery problems,too often leaving children and young people vulnerable in a poorly performingsystem of support and care. Our Inquiry noted that previous studies have found thatthe health and wellbeing of children and young people in care is affected bysystemic and practice problems (Community Services Commission, 2000b).
The current system in NSW struggles to provide many children and young peoplewith appropriate placements that can address their needs. Many children and youngpeople in care experience multiple placements and caregivers, several schoolenrolments, placements outside their own communities, poor liaison between thevarious adults and agencies charged with their care, loss of contact with friends and Inquiry into prescription and use of drugs and medications in children and young people family. This lack of stability often means that knowledge about the child’s medicalneeds and mental health is lost along the way, making it difficult to manage theirphysical and emotional health needs. Significant health conditions may be missed orat best noted and diagnosed but not treated, and poor case planning means thathealth care needs, along with other needs, are not adequately monitored or reviewed(Clare, 2001; Cashmore, et. al. 1994; Community Services Commission, 2000b).
2.1.3 Relevant legislation and standards
Currently policy and practice in out-of-home care is governed by the Children (Careand Protection) Act 1987 that clearly states that the safety, welfare and well-being ofchildren and young people is paramount. Service provision is guided by theDepartment of Community Services NSW Standards for Substitute Care Services (1998)and the recently revised Keeping Kids Safe DoCS Child and Family Handbook. Imminent changes to out-of-home care are expected early next year (2002) with theproclamation of relevant sections to out-of-home care under the new Children andYoung Persons (Care and Protection) Act 1998. Under the new legislation, the Office ofthe Children’s Guardian (Children’s Guardian) will review all case plans of childrenunder guardianship orders and be responsible for accreditation of out-of-home careservices.
2.2 Residential services for children and young people
with a disability
2.2.1 What is residential care
Most families care for their child with a disability at home. However, for a variety ofreasons alternative care may be required for some children with disabilities. Forthose children who live away from their families, the specialist disability servicesystem is heavily focused on residential care options, rather than family-like settings.
There are currently 310 children and young people living in disability services inNSW funded or provided by the Department of Ageing, Disability and Home Care.
Over 50 of these children and young people are living in large residential settingsthat accommodate adults with disabilities as well as children.1 The remainder of thechildren and young people with disabilities live in group homes or hostels,sometimes accommodating both children and adults.2 1 In 1999 the government announced its commitment to the devolution of disability residential careservices with the devolution of children’s services having priority. All children will be moved by2004.
2 Data provided by Department of Ageing, Disability and Home Care, June 2001 Inquiry into prescription and use of drugs and medications in children and young people 2.2.2 Why this group requires special consideration in the context of this inquiry.
Research indicates that people with disabilities experience poor health outcomes,including increased mortality rates, and increased rates of hospitalisation (Beange,Lennox and Parmenter, 1999). People with disabilities face specific healthmanagement issues, often involving the use of prescription medication. TheCommission has previously noted that certain functional limitations experienced bypeople with high support needs are risk factors for premature death (2001). It hasalso been noted that people with developmental disabilities have been over-prescribed psychotropic medications, resulting in serious side-effects, and that thereis a need for a rational approach to the use of psychotropic medications for peoplewith developmental disabilities (Einfeld, 1990). People with intellectual disabilitiesare often subject to polypharmacy practices (the prescription of multiplemedications), requiring rigorous monitoring and review. It has been noted that aparticular risk faced by people with disabilities is that medications are ‘oftenprescribed at the behest of caregivers’, heightening the need for careful monitoringof the effectiveness of medications and any side-effects (Beange, Lennox andParmenter, 1999).
The Commission’s work has found that children with disabilities can be placed inenvironments that fail to adequately meet their developmental needs (CommunityServices Commission, 1997; 1998a; 1998b). Poor service practices within care settingscan exacerbate existing health risks for children and young people with disabilities.
2.2.3 Relevant legislation and standards
Disability services are governed by the NSW Disability Services Act 1993 (DSA 1993).
The NSW Disability Service Standards interpret the ‘Principles’ and ‘Application ofthe Principles’ contained in the DSA 1993. The Standards in Action: practicerequirements and guidelines for services funded under the DSA 1993 provide guidelinesfor service providers. However, there are no specific provisions in the DSA or theservice standards that relate to the needs of children and young people withdisabilities.
Parts of the Children and Young Persons (Care and Protection) Act 1998 deal with theprovision of out-of-home care services, and will cover residential disability servicesaccommodating children, when proclaimed.
Inquiry into prescription and use of drugs and medications in children and young people Decisions about medication
Many children and young people in care, and people with disabilities living inresidential care, have multiple and complex health issues and/or challengingbehaviour issues that result in the use of medication. The Children and Young Persons(Care and Protection) Act 1998 requires that all decisions and actions must have thesafety, welfare and well-being of the child or young person as the paramountconsideration.3 This includes any decisions relating to medical treatment, includingthe use of medication.
The Commission holds particular concerns about the decision-making processes formedical treatment of children and young people in care settings. For the generalpopulation, decisions about medical treatment involve considering therecommendation of a medical practitioner, and the provision of consent.4 However,children and young people in care settings may have limited input into decisionsabout medical treatment, and rely on adult caregivers or guardians to makeappropriate decisions regarding their medical treatment.
Consent for medical treatment is an important safeguard, and should only beprovided on behalf of children and young people in care settings where thesubstitute decision maker can be satisfied that the proposed medical treatment is inthe best interests of the particular child or young person. For some children withdisabilities in long term residential care, their unclear legal status can complicate theissue of consent to medication.
3.1 Medical authorisation
Policy guidelines governing disability residential services and children and youngpeople in out-of-home care require that no medication can be given without aprescription from a medical practitioner. The only exemptions are for a limited rangeof some ‘over the counter’/non-prescription medicines such as mild analgesics; andnon-restricted topical agents (Department of Community Services 2000b; Ageing andDisability Department, 1998).
These guidelines are intended to ensure that an appropriately qualified personauthorises and oversights the use of particular medications for individuals.
However, the provision of a prescription by a medical practitioner is insufficient initself to ensure appropriate or transparent decisions about the use of medication forindividual children and young people. The Commission’s observations suggest thatthere is still substantial risk that medications are prescribed for individual children 3 s9(1).
4 Informed consent means that a person is entitled to be informed of the advantages anddisadvantages of what they are being asked to consent to, and possible alternatives.
Inquiry into prescription and use of drugs and medications in children and young people and young people without adequate assessment and clinical justification. Ourobservations are based on issues raised in complaints, and in our inquiries intoparticular service providers. For example, one inquiry into a large residential servicefor children and young adults with disabilities, found that a number of childrenwere prescribed medication listed as being ‘not recommended for children’ or where thesafety and effectiveness of the drug in children is not established. The medicationsinvolved included Mogadon, Clobazam, Prozac and Serenace. There was insufficientdocumentation to demonstrate the clinical justification for the use of such drugs inyoung children. A medical opinion provided to the Commission on this matterexpressed concerns about the levels of some of the medications, and stressed theneed for regular specialist review of such medical treatment (Community ServicesCommission, 1998a).
In some cases known to the Commission, children and young people have beenadministered prescription medication without documented authorisation from amedical practitioner. In one residential service for children and adults withdisabilities, we found only half the medication charts examined had been authorisedby the medical practitioner (Community Services Commission, 2001a, unpublished).
In another service for children and adults with disabilities, we found evidence ofmedications being administered prior to obtaining authorisation from the medicalpractitioner (Community Services Commission, 1998a). This appears to be aparticular risk in relation to prn medication prescribed to manage behaviour.5 The Commission has observed that some residential services for people withdisabilities and out-of-home care services for children and young people rely on theservices of only one medical practitioner or specialist for all their clients. Particularlyin residential services, it is not unusual for the service provider to arrange a ‘visitingmedical service’ where one medical practitioner regularly attends the service to dealwith the health care needs of all residents. In other services, there may be a preferredmedical provider, either an individual practitioner or a medical centre that all clientsuse. While this is generally to ensure convenient access to medical care, sucharrangements can also reduce the independence, transparency and rigour of medicaltreatment decisions, including prescribing medication.
3.2 Consent policies and practices
The Children and Young Persons (Care and Protection) Act 1998 outlines the consentrequirements for medical treatment classified as ‘ordinary’ (non-surgical andsurgical), ‘emergency’ and ‘special’. An authorised caregiver may consent ‘ordinarymedical treatment’. Special medical treatment (as defined in the Act or inregulations) requires consent from the Guardianship Tribunal, except under certaincircumstances. In relation to the use of prescribed medication, the current definitionof ‘special medical treatment’ only covers the administration of long-acting injectable 5 prn – pro re nata – refers to medications prescribed for use ‘as required’ rather than according to apredetermined administration schedule Inquiry into prescription and use of drugs and medications in children and young people hormonal substances for the purpose of contraception or menstrual management.6There is scope for further types of medical treatment to be defined as ‘special’ byregulation.7 The Guardianship Act 1987 provides a framework for substitute decision makingabout medical treatments for adults with disabilities who are unable to provide theirown consent. Under this Act, medical treatments are identified in a hierarchy, withdifferent consent requirements for each category, in recognition of the different risksand levels of intrusiveness of different medical treatments.
Children and young people in care would benefit from a clear framework forconsent that recognises some of the key medication issues canvassed in thissubmission. Allocating the responsibility of consent to major treatments to a partywho must act in the best interests of the individual is an important safeguard.
Medical treatments should be given in association with professional assessment,regular reviews and where appropriate behaviour intervention plans.
Our inquiries into a number of residential services for children and young peoplewith disabilities found a lack of clear guidance to staff about the requirements forconsent to medical treatment. In the Commission’s view, this lack of guidancecontributes to poor consent practices, with medications being prescribed for, andadministered to, children and young people without proper written consent for eachmedication from parents or those with legal responsibility for the individual.
Community Visitors have also reported concerns about the absence of documentedconsents for medical treatment, including the use of prescribed medication.
The mother of a 16-year-old young woman living in a disability accommodation service signed a medical consent form on behalf of herdaughter. This consent was sought for the administration of Epilim, Melleril, Valium and Paracetemol (the last two on a prn basis). This consent was considered to be valid for twelve months. Thisarrangement allowed the service to administer, without further consultation with the mother, a range of medications including at leastone psychotropic medication for behavioural management, over an In some services, medical practitioners and staff relied on a general consent formsigned by parents at the time of admitting the child to the residential service,sometimes years earlier (Cram House Inquiry, 1998a; Suffer the Children - Hall forChildren, 1997). General consent forms are non-specific in their terms, provide noreference to dosages or timeframes for review. General consent allows a service toadminister prescribed medications without requiring staff to obtain written consent 6 S175.
7 The draft regulations for the Children and Young Persons (Care and Protection) Act 1998 proposethat the use of psychotropic medications for the purpose of managing behaviour be considered‘special medical treatment’, but these regulations are yet to be confirmed Inquiry into prescription and use of drugs and medications in children and young people from parents for changes in medication. General consents fail to make clear thatparents retain guardianship responsibility for their children under the age of 16,unless otherwise determined by the Children’s Court (Community ServicesCommission, 1998a).
3.3 Unclear legal status
Children in voluntary care, including children with disabilities, are particularly atrisk of having medical treatment decisions made without consent from an adult whocan legally and appropriately make decisions on their behalf. Reasons for this arethat in some cases, their legal status is unclear, or caregivers are unaware of therequirements for consent where a child is in voluntary care.
Many children and young people placed voluntarily in disability accommodationservices have neither DoCS nor the Children’s Court involved in their placement.
These children and young people can be extremely vulnerable if they have little orno contact with their parents, but have not been subject to a Court order thatreallocates guardianship. There are no mechanisms to ensure their needs areassessed or to monitor the appropriateness of the placement. Often this leaveschildren and young people with no external scrutiny of their placement and no basisfor future monitoring or review. All children and young people residing in non-government accommodation services for 12 months or more should be reviewed todetermine whether they are in need of care under s10 of the Children (Care andProtection) Act 1987, and to take appropriate action if any child is so identified.
However, in practice this is rarely applied (Community Services Commission, 2000a,pp.60).
If the service provider does not have clear guidelines for responding to residentswhose legal status is unclear, they cannot ensure that appropriate consent isprovided for medication or other medical treatment. The absence of an authorisedlegal guardian may mean that children and young people are being medicatedwithout appropriate consent, or that they are not being provided with appropriatemedical treatment, as highlighted in the example below.
A young girl with multiple disabilities had lived in a disability service for over 10 years, with minimal family contact. Service records indicate that there had been concerns about the child’s low weight (5.5kgs at 10years of age) for at least 6 years. However, neither the service nor the medical practitioner took any action to secure appropriate medicalassessment or treatment, on the basis that the parents could not be contacted or were perceived to be disinterested. The service had alsonot advised DoCS that the child may be in need of care given the lack Inquiry into prescription and use of drugs and medications in children and young people 3.4 Monitoring and review of medication
Inadequate arrangements for the monitoring and review of medication are aparticular factor that contributes to the risk of inappropriate use of prescriptionmedication. Our work has highlighted the difficulties in accounting for decisionsabout changing or continuing prescribed medication regimes in the absence ofdocumented medication reviews. Common problems include poor records aboutobserved side-effects of medication or about the incidence of seizures or behaviourpatterns even when medication is prescribed specifically to manage these, and areliance by medical practitioners on verbal reports from staff and caregivers inreviewing medication regimes.
A young woman with multiple disabilities, who had been living in care for most of her life, had been prescribed Melleril (a psychotropicmedication) for many years, although it was not clear why there was continuing use of this medication. According to her client file, she hadundergone only one psychiatric review during the 13 years she had been in care and this was because of increasing spasms and possible side effects of the continuing use of Melleril.
In some cases, it is not even possible to ascertain that reviews of medication areconducted at appropriate intervals. This appears to be more of a problem where therequired review involves specialists, such as neurologists or psychiatrists. In othercases, where specialists have been involved in determining the medical treatment ofchildren and young people in care settings, it has been difficult to establish whetherthe specialist advice has been implemented.
Inquiry into prescription and use of drugs and medications in children and young people 4. Administration of medication by non-parental caregivers Administration of medication by non-
parental caregivers
Some children and young people in care settings have medical conditions requiringthe use of one or more types of prescription medication, sometimes several times aday. The safe and effective use of prescription medication relies on correctadministration, accurate record keeping, close monitoring of the effect of medicationand regular reviews of medications. The relevant policies of both DoCS and ADHCstate that the administration of medicines must be carried out according to theinstructions on the pharmacist’s label or manufacturers instructions on the containerand that records are kept of the use of all medications (Department of CommunityServices 2000b; ADD, 1998). However, our observations are that prescribedmedications are not consistently being administered in the way in which they areprescribed or in a manner that provides sufficient safeguards for consumers. Staff incare settings may be subject to competing priorities and heavy workloads, leading topractices that place the health of residents at risk.
4.1 Administration practices in residential care
Various inquiries, reviews of children with disabilities who have died in care, andreports from Community Visitors have contributed to the Commission’s concernsabout poor administration practices in residential care settings for children andyoung people, including those for children and young people with disabilities.
Information from these functions suggests a range of poor administration practicesby some non-parental caregivers including:• medications not being given on time;• the wrong medication being given to residents;• dosages administered not matching the dosages prescribed in residents file;• incidents where residents refused medication and therefore missed scheduled • medications administered in food, with the risk that it will be eaten by someone • medications being administered prior to any authorisation by a medical • immunisation medications not being kept up to date;• using other residents to assist with the administration of medication; and• medication not being stored safely.
Inquiry into prescription and use of drugs and medications in children and young people 4. Administration of medication by non-parental caregivers Family members of children and young people with disabilities in residential carehave also expressed concerns about how medication is administered. In a survey ofparents of one residential service, respondents who identified concerns associatedwith the use of medication raised issues about administration practices, inadequatemonitoring of medication, inadequate information to parents about medication, andthe lack of staff training in medication issues. One parent said ‘the current method ofmedication dispensing and recording is not proof against confusion or wrong application’(Community Visitor, 1999, unpublished).
Family members associated with another residential service for children and adultswith disabilities told the Commission that the service failed to administer theirrelative’s medication at the prescribed times. The service’s response to the family’squeries about this was that it was ‘convenient’ for workers to administer medicationto residents all at the same time (Community Services Commission, unpublished2001a).
4.2 Documentation and record keeping
Poor documentation of medication may result in inaccurate, incomplete orinconsistent records and may contribute to consequent errors in administration.
Inadequate records may also impede accurate monitoring and effective follow-upand review. The minimum practice requirements for recording of medication andreviews of medication are outlined in the two Departments’ practice guidelinesStandards in Action (Ageing and Disability Department, 1998) and Keeping Kids Safe(Department of Community Services, 2000b). The Commission’s work has raised concerns about poor documentation and recordkeeping practices. Our inquiries into residential care for people with disabilities,reports from Community Visitors to residential institutions for children and youngpeople in care and DDRT reviews indicate poor documentation practices areoccurring in some services. The type of poor practices we have found in medicationrecords include:• medication not being accurately recorded or logged at the time of administration;• variations in the type and detail of information recorded about medication;• medication charts not showing the purpose of prescribed medications;• administration of prn ‘over the counter’ and prn prescribed medications (e.g.
• authorisations and guidelines for medication from the resident’s doctor not being • medication charts for residents being filed in other residents files;• medication charts not being filed chronologically;• treatment records being dispersed throughout different files and folders, making it difficult to maintain an overview of health care; and Inquiry into prescription and use of drugs and medications in children and young people 4. Administration of medication by non-parental caregivers • not all residents having a proper history of childhood immunisation.
In one residential service for people with disabilities, the informationabout prescribed medication (name and dosage) that was recorded in the resident’s personal file, was substantially different to the information recorded in this person’s medication chart. We also notedthat many records held by this service were undated and sometimes Poor record keeping about the administration of medication poses particular riskswhere there has been a problem, such as when a dosage of medication is missed orincomplete, or where a person is given the wrong medication. If information aboutmedication errors is not recorded, it is less likely that the errors will be brought tothe attention of the appropriate manager or medical officer to determine if furtherfollow-up is required.
A child with a disability who lived in a large residential service wentthrough a period of refusing part of his medication (Epilim). Staff did not consistently record when only part of his medication was taken.
From his file review there were no records of his drug levels havingbeen tested during this period thus it is not known whether the missed doses of medication led to increased seizures. The risks associated with poor record keeping about medication are increased whenservice providers file information about behaviour, health needs and medication ofindividuals in various places. We have observed that in some disability residentialsettings, information is recorded in the resident’s personal file, resident’s medicationfile, day book and group home diary. The level of detail of information recorded bystaff often lacks consistency, and the information is not collated or co-ordinated toprovide a comprehensive record of the persons health status and needs. VariousDDRT reviews and other work focused on residential services for children andyoung people with disabilities have highlighted this problem (Community ServicesCommission: 2000d; and 20001, unpublished). The DDRT in particular, have notedpoor record keeping about seizure activity and weight reviews, and poor recordsabout reviews of medication and health conditions, as illustrated in the examplebelow.
A young girl living in a residential service for children with disabilitieshad poorly controlled epilepsy requiring her to be regularly reviewed by a neurologist. The child died in late December 1998. A review of thecare and circumstances prior to her death observed that it was difficult to assess the extent of her epilepsy and how the servicemonitored her condition, due to poor record keeping. For example, the last notation on her ‘Seizure Chart’ was in December 1997, yet the medical officer noted in November 1997, that nursing staff reportedthat the girl had daily seizures, but this was often unrecorded.
Inquiry into prescription and use of drugs and medications in children and young people 4. Administration of medication by non-parental caregivers Medical practitioners require accurate and comprehensive records of theadministration of medications in order to effectively monitor the use or effectivenessof the existing mediation regime or assess required changes. Poor documentationand record-keeping about medication and related health and behavioral issuesjeopardises the effectiveness of any medical treatment, and the capacity for accurateand considered decision making about the use of medication.
4.3 Transferring information between caregivers
Documentation and record keeping are particularly important for children andyoung people who move between settings, whether on a permanent basis or forregular short-term stays in other places. These situations include children and youngpeople going home or to respite settings for short stays, transfer of medication fromcare settings to school each day, and where children and young people changeplacements.
Appropriate arrangements for transferring information about medication regimes,and the medication itself, is essential to ensuring that medication is administeredappropriately. The quality of information exchange between the parents, staff andyoung people, and the level of support provided to the child’s family during homevisit stays, are critical to ensure a person’s health care needs are being met.
The DDRT has noted that inappropriate preparation and information transfer aboutmedication and the health of residents may occur prior to short-term visits andtransfers, as illustrated in the following example.
One service organised a temporary transfer for some of the childrenwith disabilities to a different group home within the organisation. The documentation sent with the children included information about eachchild. In relation to medication, the information sheet only directed the new caregivers to administer medication from two different dosette boxes, morning and evening. Medication charts were notprovided for the duration of the temporary transfer, which means that no records of medication administration would have been kept for thetime the children stayed at the alternate placement.
Similar issues can arise relating to exchange of information about medication andhealth care between residential centres and schools.
Greg was sent to school when unwell, with the school expressingconcern about his deteriorating health. He returned to school the following day. He continued to deteriorate and was admitted to hospital. He died one week later. Greg’s mother queried the serviceabout why her son had been sent to school when he was obviously unwell. There is no evidence that a written information system existedbetween the service and the school, although at times, embedded in Inquiry into prescription and use of drugs and medications in children and young people 4. Administration of medication by non-parental caregivers the nursing notes, specific care instructions were provided for Greg’shome visits and schooling.
Where children and young people change care placements, poor record keeping andinadequate transition planning arrangements can result in disruptions to health carearrangements, including the administration of medication. This problem has beennoted in reviews of children and young people in care, and by Community Visitors.
In some cases, it means that current caregivers have no information about whychildren and young people have been prescribed certain medications. Results ofpoorly managed moves in care include loss of knowledge about health status andneeds, and sudden changes in medication regimes, as the example below illustrates.
Sally is a young girl in state care with high support needs relating to her behaviour and mental health and is prescribed psychotropicmedication. Various health professionals were involved in her care, providing assessments and reviews, and participating in caseconferences. However, when the service she was living in closed, she was moved to a crisis placement where it appears that the newcaregivers did not maintain her medication schedule. The health professionals involved in Sally’s care were not consulted or involved in the planning for her move from one service to another, and thereappears to have been no transition planning around her medical needs.
The lapse in administering her medication resulted in Sally’s emotionalstate deteriorating, followed by an admission to the hospital.
While stable placements are more likely to result in continuous health care, recordkeeping and documentation are critical to safeguard against a child’s medical historyand medical treatments being forgotten and thus not appropriately monitored andreviewed. Medical and health care history should also be recorded for the purposesof case planning and life story work.
Inquiry into prescription and use of drugs and medications in children and young people 5. Use of drugs and medication for management purposes Use of drugs and medication for
management purposes
Some children and young people (including those with a disability) may havebehaviours or physical needs that may result in the use of medication formanagement rather than treatment purposes. This includes children and youngpeople who behave in ways that are self-harming, harmful to others or to property.
Other examples include the use of medication to suppress or manage menstruationin young women, particularly those with disabilities.
Where children and young people are in care settings there is a risk that decisionsabout using prescription medication can be influenced by the interests or needs ofthe caregiver, which might be different to the interests of the individual. We haveobserved examples of such situations through our complaints handling andinquiries, as well as reports from Community Visitors.
In some cases, the inappropriate environments in which children and young peopleare placed can exacerbate their challenging behaviour. Management strategies otherthan medication can be thwarted because of poor client to staff ratios or the lack ofadequately trained and experienced staff. Safeguards are needed to ensure thatalternative options to medication for management purposes have been considered,that medication decisions are reasonable and in the best interests of the individualchild or young person, and that medication is part of an overall management planfor the child or young person.
5.1 Challenging behaviour
5.1.1 Psychotropic / sedative medications and children and young people with
disabilities
The use of psychotropic/sedative medications for the purpose of reducingchallenging behaviour, particularly in the absence of a psychiatric diagnosis,constitutes chemical restraint. Medication for dealing with challenging behaviourmay be prescribed on a prn basis or scheduled basis, and involves the use of drugsthat affect the central nervous system. The risks associated with the use of chemicalrestraint include: • the wide discretion available to caregivers to determine when to administer prn • use of medications that are contra-indicated for children;• reliance on medication in lieu of other behaviour management strategies;• side-effects of some psychotropic and sedative medications; and Inquiry into prescription and use of drugs and medications in children and young people 5. Use of drugs and medication for management purposes • the impact of different medications interacting with each other.
The issues associated with the use of psychotropic medication on children andyoung people have been recognised in guidelines issued by both the Department ofCommunity Services and the Department of Aging Disability and Home Care.
Keeping Kids Safe states it is important to consider possible alternatives or seekfurther professional advice rather than use medication as a form of restraint, andthat psychotropic medication should only be used after a comprehensive specialistassessment.
The Ageing and Disability Department’s The Positive Approach to ChallengingBehaviour: Policy and Guidelines addresses the use of psychotropic medication in thecontext of providing disability services. The Guidelines state that while any medicalpractitioner can legally prescribe psychotropic medication, it is advisable to consult apractitioner with expertise and experience in intellectual disability and psychiatry.
The Guidelines also require that regular review should be undertaken of the effect ofmedication on target symptoms (Ageing and Disability Department, 1997, pp.88-89).8 Reports from Community Visitors and observations from reviews have notedsituations where prescription medications have been used to make children andyoung people easier to manage, including restraining challenging behaviour,particularly through excessive or inappropriate use of prn medication. Examplesinclude Community Visitors reporting that file notes refer to prn medication beingused to ‘calm’ residents down or to ensure the young person was ‘good on outings’. Inone of our inquiries into a residential service for children with disabilities, we foundthat children had been prescribed psychotropic and sedative medication, includingMogadon and Valium, for behavioural purposes. Records showed that staff used prnValium to sedate a child for reasons such as ‘refused to go to bed’, ‘tantrums’ and‘unusual nuisance behaviour’. This service did not have any policies or guidelinesgoverning the use of psychotropic / sedative medication for managing challengingbehaviour. Our inquiry also found that staff had no expertise in behaviourintervention (Community Services Commission, 1998a).
In another example, there was reported conflict between a caregiver and a schoolwhen the school wanted a child’s medication dosage increased so the child’sbehaviour would be easier to manage.
Where psychotropic/sedative medication is being prescribed for the purposes ofmanaging challenging behaviour, it should only be used as part of a broaderbehaviour management plan detailed in a child or young person’s individual caseplan. Reviews of people in care, inquiries, and reports from the Community Visitorshave shown that medication is often the only strategy for the management ofchallenging (including offending) and self injurious behaviour in residential care.
The following example illustrates the failure of the system to address the causes ofchallenging behaviour, and a reliance on the use of medication.
8 ADD’s Standards in Action do not specifically address psychotropic medication.
Inquiry into prescription and use of drugs and medications in children and young people 5. Use of drugs and medication for management purposes Joe is a 13 year-old boy with an intellectual disability who was a victimof sexual assault and exhibits sexually inappropriate behaviours. Joe was placed with two other adolescent males with intellectualdisabilities who also have challenging behaviours, including aggressive outbursts and sexually inappropriate and offending behaviour. All threewere prescribed psychotropic and other medications, including Melleril.
The staff in the house were unable to implement any effectivebehaviour management plans for the boys due to their lack of expertise, and none of the boys were being provided with appropriate The lack of rigorous monitoring and review of the use of psychotropic/sedativemedications to suppress challenging behaviour can result in ongoing use ofmedication without adequate clinical justification, or careful consideration of thebalance between the need for the medication and side-effects and interactions withother medications. Monitoring and review of medication is particularly importantfor those children and young people who are prescribed multiple medications. Wehave found situations where children and young people have been prescribedpsychotropic / sedative medication as a short-term measure or during a crisis andbecause their behaviour settles down the medication is continued, in some cases intotheir adulthood. Long term use of some forms of medication or the impact ofpolypharmacy can lead to irreversible side-effects, as illustrated in the examplebelow.
A young boy with a disability and significant challenging behaviour wasprescribed multiple medications, including Prozac and Serenace, in an attempt to manage his self-injurious behaviours. During a medical review, a doctor recommended that the use of Serenace be taperedoff due to its contribution to restlessness, appetite stimulation and the development of tardive dyskinesia in the longer term. At the time ofour review a few years later, this had not occurred and medication remained the primary way of managing this child’s self-injuriousbehaviours.
5.1.2 Children and young people with Attention Deficit and/or Hyperactivity
Disorder
Our work has found a significant number of children and young people in care arediagnosed with Attention Deficit Disorder (ADD) and/or Attention Deficit andHyperactivity Disorder (ADHD). In our survey of files of state wards who had hadcontact with the juvenile justice system, we found just over one third had beendiagnosed as having ADD or conduct disorder (Community Services Commission,1999a). In a group review of 17 children and young people formerly living in a largeresidential care service for children in substitute care, we observed thatapproximately one third were receiving medication prescribed and reviewed by a Inquiry into prescription and use of drugs and medications in children and young people 5. Use of drugs and medication for management purposes pediatrician or psychiatrist for ADD or ADHD (Community Services Commission,1999c, pp.47-51).
In our consultations about issues for children and young people who were at risk ofcontact with the juvenile justice system, concerns were raised about the extent towhich these children were receiving appropriate medication and medicalsupervision for their ADD or ADHD. Children and young people with ADD orADHD may find themselves in a ‘no-win’ situation, where their challengingbehaviour may contribute to placement disruption, with resultant difficulties inmaintaining continuity of medication regimes. The Commission has found thatmultiple placements were common among a group of young people in care withAttention Deficit Disorder (Community Services Commission, 1999a). Changes incaregivers and doctors means loss of continuity of care and diffused responsibilityfor a child’s medication and management.
Recent research shows that a large number of children diagnosed with and receivingmedication for this condition in NSW are not being adequately monitored, in termsof their changing needs and the possibility of over medication (Community ServicesCommission, 1999a, pp.28-29). If this is a problem for children living with theirparents, then it is likely to be a problem for children in care who may receiveinconsistent care and are not subject to regular medical check-ups.
5.2 Menstrual management
Young women with disabilities who are menstruating may present managementdifficulties for caregivers. In a few instances, the Commission has found youngwomen with disabilities being prescribed contraceptive medication for the purposesof managing or eliminating menstruation. This is a particular concern wherealternative options for managing menstruation issues have not been considered, orwhere there is no valid consent for this treatment. Our inquiry into a residentialservice for children and young people with disabilities found a number of youngwomen were prescribed Depo-Provera (a long acting injectable menstrualsuppressant) or the contraceptive pill. There was no evidence that alternativeapproaches to menstrual management were discussed within the service or withparents before resorting to chemical suppression. In one case, the records for oneyoung woman stated ‘it is to help control her periods so that she may be easier to nurse’.
(Community Services Commission, 1998a). In another situation, a CommunityVisitor reported that a 12 year-old girl in a residential service was prescribed Depo-Provera after only one menstruation.
Inquiry into prescription and use of drugs and medications in children and young people 6. Use of alcohol and tobacco by children and young people in care Use of alcohol and tobacco by children and
young people in care
Many children and young people in out-of-home care are grappling with personalhistories of family breakdown, neglect and abuse. When in care, some children andyoung people are further harmed by multiple placements, long stays in institutionalsettings, disrupted relationships and low family contact. Some young people havetold the Commission they get ‘really pissed off or angry’ and they participate in unsafepractices such as smoking cigarettes, drinking alcohol, taking amphetamines, heroin,marijuana, sniffing aerosol and lighter fluid. Some young people in care whosesituations we have reviewed had developed significant problems with drug andalcohol dependency resulting in hospital admissions, and in a one case, death froman overdose (Community Services Commission, 1999a, 1999b and 1999c).
Young people in care who have contact with the juvenile justice system areparticularly likely to be using alcohol or other drugs. A study conducted for theDepartment of Juvenile Justice showed that approximately one quarter of a sampleof 279 young people detained in juvenile justice centers perceived themselves assuffering from a current alcohol or other drug problem. Of the young people in thesample, 90 per cent reported having tried alcohol, tobacco, cannabis and painrelievers; 33 per cent had tried amphetamines; and nineteen per cent had triedheroin (Zibert, Hando and Howard, in Community Services Commission 1999a,pp.27).
Young people in care can also experience difficulties in accessing appropriateservices to address their use of drugs and alcohol. Problems include poorassessments and identification of substance abuse issues, and poor caseworkpractices. During the Commission’s inquiry into substitute care, we were told thatthere is a critical lack of inpatient detoxification services for young people, and ofdrug and alcohol rehabilitation services, particularly in regional areas. Serviceproviders also expressed frustration at the time consuming and ineffective processesfor negotiating with drug and alcohol services on behalf of children and youngpeople in care (Community Services Commission, 2000b). Additionally, there is aneed for effective interagency work between DoCS, juvenile justice, health andeducation for those young people in care who abuse drugs and alcohol to ensure aconsistent and comprehensive approach to service provision and case planning.
Addressing substance abuse by young people in care is complicated when youngpeople are reluctant or not ready to seek treatment or counselling. The Commissionhas seen that even when a quit smoking programs are run in residential services,uptake was low (Community Services Commission, 1999b and 1999c).
Inquiry into prescription and use of drugs and medications in children and young people Systemic issues
This section identifies and describes some of the systemic issues emerging from theinformation available to the Commission about poor or inappropriate medicationpractices. These observations are drawn from the body of work referred to inprevious sections, including inquiries, reviews, complaints and Community Visitorreports. The issues described here are those that warrant attention at a systemic orservice-wide level in order to promote more appropriate use of prescription drugsand medication for children and young people in care settings.
7.1 Poor health care management
The problems observed in relation to the use of medication are, in many cases,associated with poor health care management generally. This includes arrangementsfor overall health management, and access to specialist medical care.
Despite the complex or high health needs of some children and young people in caresettings, and the evidence that children and young people in care (including thosewith disabilities) have poor health outcomes, health care is still not receivingsufficient priority for this group. Indicators of an absence of a structured focus onhealth care needs for children and young people in care settings include:• the failure of case plans for children and young people to include health issues;• failure of service providers to obtain specialist assessments or reviews; and• problems in co-ordinating health care arrangements (Community Services Commission 1998a; 1999c; and 2000d).
Although it is well documented that children with high support needs are at risk ofbeing poorly nourished and chronically underweight, the adequacy of health caremanagement for this group remains a major concern.
Problems in managing the health care of children and young people in care settingsare exacerbated by problems in accessing specialist assessments and support.
Numerous Commission reports have noted difficulties experienced by serviceproviders and case workers in ensuring the provision of specialist health services forchildren and young people in care settings. Our reviews of children with disabilitieswho have died in care indicate that this appears to be a problem even where thechildren and young people involved have complex health needs associated withsevere levels of disability, and even where they are residing in congregate caresettings staffed by nurses. In some instances, recommendations arising from one offmedical reviews have not been implemented, even when these have required urgentattention.
Inquiry into prescription and use of drugs and medications in children and young people 7.2 Lack of continuity in care
Managing the health care needs of children and young people in care settings ischallenged by lack of continuity in care arrangements. Continuity in health care canbe threatened when children and young people move between placements, or whenthere is a change in caregivers or health care arrangements within residentialsettings. The poor documentation and record keeping evident in some care settingssubstantially exacerbates this risk.
Our work has confirmed that continuity of medical care and counselling services is asignificant problem for children and young people who change placementsfrequently (Community Services Commission, 1999c). Results of disrupted carearrangements include poor monitoring and review of medication and other healthissues, loss of knowledge about medical treatment and history, and even failure toadminister prescribed medications. We also know that children and young peopleexperiencing multiple placements include those who have intensive support needs,including behavioural difficulties, conduct disorder and mental health issues(Community Services Commission 1999c and 2000c). This group of children andyoung people are particularly in need of comprehensive health care management toensure appropriate treatment for their needs.
Foster carers have also reported that some children and young people are placedwith them without adequate information about their needs and history, includingissues of health care and medication.9 7.3 Caregiver training and expertise
In NSW, there are no standard competency requirements for staff and caregiverslooking after children and young people in care settings. This means that the skilllevels of those providing direct care can vary widely, and training arrangements aread hoc. Both required skill levels and training arrangements are determined at thediscretion of the service provider. We have observed that many residential careworkers were untrained or undertrained and inexperienced (Community ServicesCommission, 1996).
In relation to the use of prescription medication in children and young people in caresettings, we are concerned about three particular areas of expertise:• management of health needs and medical conditions;• behaviour intervention; and• requirements for consent to medical treatment.
9 Commission discussions with foster carers 2001, and representations from foster carerepresentatives.
Inquiry into prescription and use of drugs and medications in children and young people This is consistent with a recent review of group homes for people with disabilitiesthat found critical gaps in the training and skills of staff, including in areas such asfirst aid, behaviour intervention and specialised support (Audit Office of NSW,2000).
In some of our work, we have noted that even in care settings for children andyoung people with disabilities, staff may not be provided with basic first aidtraining, or training in epilepsy management. In such circumstances, there issubstantial risk that staff may not be able to detect, or respond appropriately to,critical incidents such as seizures or choking, and subsequent drowning andasphyxiation (Community Services Commission, 2001; 2000d; and 1997). In thespecific area of nutrition management of children with disabilities, the lack oftraining and supervision in feeding techniques, physical positioning andmanagement of swallowing difficulties continues to be a major concern, placingchildren and young people with disabilities at serious risk of harm.
Lack of training also means that staff may not be able to adequately follow-throughon medical treatment regimes, or to monitor the administration and side-effects ofprescribed medications.
The lack of adequate training of staff to deal with challenging behaviours of childrenand young people is an issue we have raised repeatedly as a result of individualreviews, group reviews, investigations and policy work. We recently surveyedproviders of out-of-home care and supported accommodation for children andyoung people and found that 11.4 per cent of respondents provided no training inbehaviour intervention for staff or caregivers. The remainder of services reportedproviding some form of training in general behaviour intervention, but 36 per cent ofthose who allowed the use of restraint did not provide specific training in the use ofrestraint (Community Services Commission, 2001c).
The findings from a number of inquiries into services for children and young peoplewith disabilities consistently highlight problems related to the lack of knowledgeamongst staff about consent requirements for the use of prescription medication(Community Services Commission 1998a, 1997, 2001a unpublished).
Inquiry into prescription and use of drugs and medications in children and young people The Way Forward
Over the past few years, the Commission has made numerous recommendations tothe Department of Community Services and the Department of Ageing, Disabilityand Home Care that identify directions for developing better systems to promote thehealth and wellbeing of children and young people in care settings.
At present, there are several processes of reform and policy development thatprovide opportunities for improving the management of health care, including theuse of prescription medication, for children and young people in care settings. Theseinclude the new legislative framework for children and young people in care, and itsaccompanying regulatory and policy guidelines, and the establishment of aChildren’s Guardian. In the disability area, the current devolution of largeresidential centres gives priority to moving children and young people withdisabilities from institutions into community based placements. The Department ofAgeing, Disability and Home Care has also recently moved to address core issuesrelating to the health and well-being of people with disabilities, through thedevelopment of action plans on nutrition and death, and the drafting of a policy onhealth and wellbeing.
In this section, we summarise some of the key directions for addressing the problemsdescribed in our submission.
8.1 Co-ordination and responsibilities
The need for interagency co-ordination and clearly articulated responsibilities andlinks between services for children and young people in care settings has beenidentified in various Commission reports (1999a, 1999c, 2000b, and 2000d). Childrenand young people who are most at risk of inappropriate use of prescriptionmedications and substance abuse are amongst those most in need of a range of co-ordinated services.
Some of the key specialist supports needed in meeting the health care needs ofchildren and young people in care settings include:• adolescent mental health services;• mental health services for children and young people with cognitive disabilities;• drug and alcohol services;• treatment services for children and young people with Attention Deficit Disorder or Attention Deficit Hyperactivity disorder; • behavioural assessment and intervention services; Inquiry into prescription and use of drugs and medications in children and young people • physiotherapists;• dental services;• speech therapists and dieticians in relation to nutritional and feeding practices, particularly for children and young people with severe disabilities; and Some specific proposals for improving the co-ordination of services to improvehealth care management and outcomes for children and young people in careinclude: • The development of an integrated framework that defines respective roles and responsibilities for supporting children and young people in substitute care,using the Interagency Guidelines for Child Protection Intervention as the model for awhole of government approach (Community Services Commission, 2000b). Anoverarching framework should also deal with enhancing the capacity, availabilityand accessibility of preventative health programs for children and young peoplein care settings.
• The development of inter-departmental agreements for the provision of, and access to, support and other services (Community Services Commission, 1999a).
These agreements or guidelines should address access to specialist healthservices such as child and adolescent mental health, adolescent drug and alcoholservices and behaviour intervention support.
• The release and implementation of the policy framework on children and young people with disabilities that is being developed by the Department of Ageing,Disability and Home Care. We are hopeful that the establishment of a policyframework for children with disabilities will address issues of access to healthand other specialist services needed to promote appropriate health caremanagement.
• The establishment of multi-disciplinary assessment clinics for children and young people with disabilities and high medical support needs, to provide experthealth assessments, screening and reviews. Specialist clinics could play a key rolein the co-ordination, referral and follow-up of specialist medical input for thosein need of close health care management (Community Services Commission,2000d).
• The establishment of a cross-agency program for children and young people in care who have challenging behaviours, incorporating services from theDepartments of Health, Housing, and Education and Training to provide anintegrated range of supports addressing therapeutic as well as care needs(Community Services Commission, 1999a and 1999c).
Inquiry into prescription and use of drugs and medications in children and young people 8.2 Accountability and monitoring
The problems we have observed with the use and management of prescriptionmedications for children and young people in care settings highlights the need forvigilant monitoring and effective accountability mechanisms. We believe the systemof safeguards should include those focused on individual children and youngpeople, as well as those that focus on practices and responsibilities of serviceproviders.
There are a number of new safeguards for individual children and young people incare settings, based on provisions in the Children and Young Persons (Care andProtection) Act 1998. We believe that a number of these provisions, if developed andimplemented appropriately, could significantly improve the accountability andmonitoring of medical treatment.
Some specific proposals for improving accountability and monitoring include:• Incorporating health care management issues in the review of out-of-home care placements to be conducted by the Children’s Guardian and designated agencies,as defied by the Children and Young People (Care and Protection) Act 1998.
• Incorporating a review of standards and processes for health care and medication management in the accreditation process for agencies providing out-of-homecare.
• Clarifying consent requirements for the use of special medical treatment and certain classes or uses of prescription medication, under regulations to theChildren and Young Person (Care and Protection) Act 1998.10 • The introduction of clear guidelines by the Children’s Guardian about the exercise of parental responsibility, including consent for some types of medicaltreatment, for children and young people in care.
8.3 Promoting good practice
8.3.1 Policy and practice guidance
Our work suggests that there are a number of key areas where clear policy andpractice guidance for service providers is needed to better protect children andyoung people from the risks associated with the use of prescription medication.
Common themes have emerged from reviewing the deaths of people with 10 The draft regulations for the Children and Young Persons (Care and Protection) Act 1998 propose thatthe use of psychotropic medications for the purpose of managing behaviour be considered ‘specialmedical treatment’, but these regulations are yet to be confirmed.
Inquiry into prescription and use of drugs and medications in children and young people disabilities, inquiries into particular service providers, and our policy research,indicating some core areas where greater policy and practice guidance is required.
Specific areas requiring the development of policy and practice guidance include:• A centralised policy framework to promote the use of appropriate behaviour intervention strategies for children and young people in out-of-home caresettings, and to reduce the use of inappropriate or unnecessarily intrusive formsof behaviour management, including the use of psychotropic drugs andmedications (Community Services Commission, 2001c).11 • Mechanisms to regulate and guide practices within disability accommodation services in key areas such as record-keeping about medication and health care,management of epilepsy, and the management of self-harming behaviours(Community Services Commission, 2001).
• Improving the focus on identifying and addressing health issues as part of case management to ensure that children and young people in care receivecomprehensive and continuous health care management, includingcomprehensive periodic reviews of prescription medications.
• Guidance to services about identifying children whose legal status needs to be resolved, and about appropriate arrangements for consenting to the use ofprescription medications and other medical treatment.
8.3.2 Workforce development
The problems we have observed about staff competencies in relation to themanagement of medication and health care are indicative of a systemic need forworkforce development. As noted in Section 7, the absence of any standardcompetency requirements for people providing direct support to children and youngpeople in care settings means that there can be considerable variation in the skills ofstaff and caregivers.
In order to address workforce development issues, the Commission has previouslyproposed:• Consideration of pre-entry training and accreditation for those seeking to work in residential settings, using models already established in other industries(Community Services Commission, 1996).
• an enhanced commitment to training and development to attract and retain quality workers and caregivers for children and young people with high supportneeds in the out-of-home care system (Community Services Commission, 2000b).
In relation to the specific issues of health and medication management, our workindicates that direct caregivers require training in the following areas: 11 Although the Keeping Kids Safe Handbook provides some guidance relating to the use of psychotropicmedication, there are no specified processes for ensuring compliance with the guidelines.
Inquiry into prescription and use of drugs and medications in children and young people • behaviour intervention;• first aid;• safe and effective use of medication, including monitoring and recording of side- • accurate record keeping; and• case management and casework practices.
Inquiry into prescription and use of drugs and medications in children and young people 9. Conclusion
Children and young people in care settings, including those with disabilities,comprise a highly vulnerable sub-set of the population of children and youngpeople. Although they may experience some of the same problems as other childrenand young people with the use of prescription medication, they are also subject toadditional risks and difficulties due to their circumstances and characteristics.
The issues associated with the use of prescription medication are compounded forsome children and young people in care settings because they have more complexhealth needs, associated with a disability, conduct disorder, or experience ofpersonal trauma. The circumstance of being in a care setting also contributes to therisks of poor medication and health care management, where the care is disrupted orwhere non-parental caregivers are insufficiently trained or supervised to managemedication regimes. Issues around decision making for medical treatment, includingconsent and medical authorisation, are also more complicated for children andyoung people in care settings, than for those whose total care rests with theirparents.
Many of the problems we have observed in relation to the use and management ofprescription medication for children and young people in care settings are indicativeof broader problems in health care management for this group. While some of theproblems we have identified in this submission could be addressed through specificchanges to practices around the prescription, administration and management ofmedication, substantial change in the health outcomes for children and youngpeople in care settings will require broader systemic and service-wideimprovements.
Inquiry into prescription and use of drugs and medications in children and young people Glossary
Ageing and Disability Department, NSW.
Department of Ageing, Disability and Home Care, NSW.
Previously known as ADD.
Community Services (Complaints, Reviews and Monitoring) Act1993, NSW. Large institutional, group homes, hostels and miniresidential centres provide residential accommodation tochildren and young people with disabilities (often theyaccommodate adults as well) and operate under the DSA1993.
Department of Community Services, NSW.
Disability Services Act 1993, NSW. Looking After Children (case work management tool).
Out-of-home care is care provided for a child or youngperson away from their usual home and by a person who isnot their parent or relative. They operate under the Childrenand Young Persons (Care and Protection) Act 1998. Careprovided in situations such as boarding schools andhospitals is not considered as out-of-home care (oohc).
pro re nata – refers to medication that is prescribed for use‘as required’ rather than according to a predeterminedadministration schedule Inquiry into prescription and use of drugs and medications in children and young people Bibliography
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Cashmore, J., Dolby, R and Brennan, D. 1994 Systems Abuse Problems and Solutions. Areport of the NSW Child Protection Council. Publication now available at theCommission for Children and Young People, Sydney.
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Community Services Commission (2000d) Critical Event at Grosvenor, Sydney.
Community Services Commission (2000e) Inquiry into Substitute Care Practice in aRegional Community Services Centre, Sydney.
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Community Services Commission (1999b) Ormond Investigation Report, Sydney.
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Guardianship Board (1994b) Behaviour Management and People with an IntellectualDisability – the role of the Guardianship. 1994 updated version. Training and InformationBranch, Guardianship Board, Sydney.
Law Reform Commission 1999 Review of the Disability Services Act 1993 (NSW)Report No. 91 NSW Law Reform Commission Inquiry into prescription and use of drugs and medications in children and young people Appendix 1: Unpublished Work
• one inquiry into residential services for children and adults with a disability • one investigation into residential services for children and adults with a disability • fourteen reviews of children in care (including children with disabilities) since • fourteen reviews conducted by the Disability Death Review Team (DDRT) since • complaints data on the issue of medication since 1997; • results of a survey of parents who have a child with a disability living at a non- government residential service for children, young people and adults with adisability (Community Visitor, 1999); and • Community Visitors data since 1998.
Inquiry into prescription and use of drugs and medications in children and young people

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