Submission to Department of Health on:

Final Draft Guidelines for Licensing of Community – based Facilities that Render Mental Health Services

by:

The Ubuntu Centre (062 -063)

110 Coronation Street

Maitland

Contact: A. Robb

0720441024/ theubuntucentre@gmail.com

March 2010

Introduction

The National Department of Health’s draft guidelines for licensing community mental health services that has been circulated for comment is an important document. It carries with it the possibility of regulating and thus protecting the rights of people that use these services and especially those that live in residential community health facilities provided for them. The standards by which the licences will be issued is referred to under “minimum requirements” (section 8). This commentary will submit that the minimum standards as contained in this document can in no way ensure that that applicants or the Health Department can sufficiently determine that acceptable standards of residential support services are being rendered when the license is issued and at the annual audit. This could leave people who find themselves in residential community mental health facilities vulnerable to continued violations and not ensure the maximum quality of life and dignity that is their right.

The Department of Social Development has drafted Minimum Standards for Persons on Residential Facilities of Persons with Disabilities but those finding themselves in community mental health facilities may fall through the cracks as these standards and criteria may not apply to them when registered by the Department of Health. Licensing in the absence of stating the necessary standards and criteria required to render residential services is dangerous and unacceptable considering the widespread abuse and stigmatization of people considered suffering from mental illness and intellectual disability.

The Western Cape Comprehensive Health Plan 2007 on pg 81 lists three major types of facilities that deliver services:

Type A: Outpatient and Emergency services

Type B: Residential care

Type C: Day care

It is Type B that is of particular concern and is the focus of this commentary.

Type B residential care is subdivided into group homes, boarding houses and halfway houses. Furthermore, on page 84 – 85, Table A58 elaborates the “Standards for the delivery of community mental health services” which clearly has a focus on the delivery of health care but no regard or scant significance for Type B facilities that provide residential care. Residential care of people with psychosocial disabilities when licensed by the Department of Health must take into account the Minimum Standards on Residential Facilities for Persons with Disabilities that is drafted by the Department of Social Development (See Appendix A). The Department of Health is responsible for the medical care of people in Residential Facilities but also must ensure that these facilities meet the requirements of the UNCRDP for residential service delivery. The Standards for the delivery of community mental health services does not adequately protect individuals in these residential facilities where the potential for abuse and neglect is obvious and has been widely documented in this country.

There has been a fundamental paradigm shift internationally as to how people with “mental illness” and “intellectual handicaps” are regarded and reflected in international and national policies. People that are regarded as “mentally disabled”, whether this is regarded as a result of mental illness or intellectual impairment, are referred to as people living with psychosocial disabilities. The person is put before the impairment/diagnosed “illness” and not discriminated by the impairment or diagnosed “illness”. The draft guidelines should reflect this trend and refer to people living with psychosocial disabilities.

This is reflected in the United Nations Convention of People with Disabilities (UNCRPD[1]) (2006) that was signed and ratified by the South African Government in 2007. South Africa was instrumental in drafting the Convention and amongst the first of the State Parties to sign and ratify it. Thus as a significant State Party to the Convention all our policies need to reflect our commitment and obligation to this international treaty. The Guidelines for Licensing Community based Facilities that render Mental Health Services inadequately accommodates this commitment and obligation and reflects a lack of understanding of the implications.

Article 4 of the Convention obligates the SA Government has to comply with these provisions:

“States Parties must, inter alia, review and revise legislation, promote universally designed goods, services, and facilities, and develop policies and programmes to implement the Convention and consult with persons with disabilities in doing so.”(2008)

People living with psychosocial disabilities that find themselves in residential care are one of the most marginalized and vulnerable groups in our society. This is compounded by the “insufficient development of activism within the community, and the mental health and disability movement” (pg 185) as reported by The Mental Health and Poverty Project (MHAPP)[2]South African Report (2009). This is the most recent comprehensive review of the general context of mental health in South Africa and clearly indicates the scarcity of mental health advocates and activists to safeguard the rights of people in these residential facilities. It is thus imperative that the Health Department when considering Licensing requirements must consider the extreme vulnerability of these residents that are stigmatized, often not wanted by families and thus “dumped” in these facilities.

It is abundantly obvious that the Health Department aims to “hand over” the “dehospitalized”, “deinstitutionalized” and those needing supportive living arrangements to civil society organizations. This needs to be done in a responsible manner. There is inadequate oversight of the NPO/NGO/CBO sector that is required to meet this responsibility.

The nature of these civil society organizations is that they are accountable only to their constituency or management committee. If their constituency is people with psychosocial disabilities, there must be adequate standards and criteria whereby they deliver and that determines the licensing of their services. Management Committees must know their responsibilities. Without this, it amounts to the Government “dumping” the vulnerable to the mercy of communities, organizations and individuals that may not comprehend, implement or practice observing the rights and needs of people with psychosocial disabilities.

Licensing Guidelines should reflect the standards and criteria by which people and organizations wanting to render this service are obligated to adhere to. This will ensure adequate supported living arrangements are provided. Relying on an assumption that “These structures are often more sensitive to local realities and are in most instances committed to innovation and change.”(pg 4 of the draft guidelines) clearly indicates that this is not a certainty and must be interrogated and a warning of the need to proceed with care and caution.

In addition, if insufficient guidelines are produced, people with psychosocial disabilities and their families, staff and interested parties will not know what their reasonable expectations and rights should be of community residential facilities that render mental health services and will be rendered further voiceless, disempowered and exposed to potential rights violations.

It is thus suggested that in Introduction to the Guidelines:

The legislative obligations and ethos of the UNCRDP (2006), The Constitution of the Republic of South Africa (1996) and Mental Health Care Act (2002) is reflected in its introduction. As the Introduction is written it simply reflects a continuation of a paternalistic ethos of a “less restrictive environment” as the core goal and aim. Article 19 clearly articulates this right not as a “less restrictive environment” but rather as focused on “independence and inclusiveness”:

“States Parties must ensure that persons with disabilities can live in society autonomously and are included in the community with equal access to community services and facilities.”

The introduction needs rather to be framed in terms of Article 3 where the general principles and fundamental concepts are outlined: Respect for the inherent dignity and autonomy of the person, non discrimination, participation and inclusion in public life and equality.

Most importantly it needs to refer to “mental health care users”, “mentally ill” or the intellectually disabled” as people living with or experiencing[3] psychosocial disabilities. The person needs to be put before the “illness” or “disability”. It must be a progressive policy document as the Health Department claims their policies to be.

The introduction is scant and does not reflect any clear shift of thought or insight or cognizance of international trends or the current South African context. It rather conveys the impressions that we are creating mini psychiatric institutions or institutionalized care within the communities. Rather a shift towards human rights and community inclusion of people labeled previously as mentally ill or intellectually handicapped should be clearly articulated. The introduction does not clearly articulate a commitment to move away from institutionalization and its disastrous consequences and consequential minimization of the quality of life. The potential for human rights abuses thus remains and improvement of the quality of life is not stated as an aim.

The following ethos of the convention must be made clear as the rational for ensuring that the licensing of community mental health centers has the aim of ensuring Article 10:

The right to enjoyment of life - States Parties must take all necessary measures to ensure that persons with disabilities have the same right as others to the effective enjoyment of life

This importantly means that people living with psychosocial disabilities must be accommodated and that the state has the obligation to ensure that measures are taken to realize this and provide for centers that uphold and implement the standards inherent in the Convention.

Purpose:

The draft guidelines state that there are two main purposes: (3.1) the procedure (which is administrative) and the (3.2) minimum health standards. In residential facilities health standards together with residential standards must be considered. Health standards are contingent and implicated in minimum residential standards. They cannot stand alone with the assumption that minimum health standards will ensure adequate residential services.

Obviously missing as a purpose of this document is the requirements and provision for annual “auditing” of the licensed facilities.

The purpose of the licensing must make clear that it includes provision for 43 (1) (b) of the Regulations of the Mental Health Care Act of 2002 which states that the facility be “subjected to at least an annual audit by designated officials of the provincial department concerned”. These “designated officials” need to be defined in the licensing guidelines. This is an important aspect to ensuring that the guidelines are adhered to.

As argued above there is very limited oversight of the NPO/NGO sector and essentially people with psychosocial disabilities are at the mercy of an unregulated body of community organizations that have an inadequate system of accountability. Licensing increases accountability and thus monitoring plays an important role. If it is argued that these management structures and service providers are accountable to the people they serve, this would indeed be transferring the responsibility of monitoring to the most vulnerable and marginalized that historically have the weakest voice in society. Very often there is no family contact or existing community support systems. It would be irresponsible of Government to implement draft guidelines for licensing without sufficient oversight and making clear provisions for inspections/assessments/monitoring of these residential facilities.

A case study in Maitland, Western Cape where there is a high concentration of squalid cramped unlicensed “boarding houses” and homeless ex “patients” congregate revealed that 98% of people leaving a psychiatric hospital after a long stay do not have contact with family (Stratham, K. 2000). This alone, together with the acknowledged scarcity of mental health care rights advocates and the extreme possible marginalization and social isolation of people that will find themselves in these facilities, should alert the government to implement adequate monitoring of licensing requirements.

To provide for the transparent public reporting mechanisms of these annual “audits” must also be a purpose of the draft guidelines.

Legal Mandate (4)

The listing of the legal mandate should quote the Convention of the Rights of People with Disabilities (2006) as the leading document thus demonstrating South Africa’s recognition of the intrinsic rights of people impaired by a psychiatric diagnosis, intellectual or mental impairments (ie. psychosocial disabilities).

The Constitution and the Mental Health Care Act (2002) should be stated as relevant. All other legislation is obviously relevant to people with psychosocial disabilities and listing it creates the impression of marginalization.

Guiding Principles (5)

The guiding principals as stated refer to (1) community inclusion, (2) Human Rights, (3) Safety, (4) Accommodation, (5) improving “social competence,(6) cultural sensitivity and (7) people driven.

Great exception is taken to 5.5 where: “Services must aim at improving social competence by enhancing individuals’ social skills, psychological and occupational functioning”. This is discriminatory and indicates a lack of “competence” judged according to the norms and requirements of society that disable people in the first place and reflects an attempt to “normalise” people with psychosocial disabilities so that they “fit in”. It does not accept and respect their inherent dignity by accommodating their impairment. Services must rather be supportive and enabling so as to accommodate their impairment so that they can enjoy a good quality of life

In 5.7, the services are said to be “people driven”. It is argued that it is better to say “person centred” after are not all services people driven while “person centred” entails that they are designed to take into account the needs and dignity of the service user?

And thus a “person-centred” approach would entail that programmes and facilities be gender, culture, language, geographically and religiously sensitive as alluded to in 5.6.

The mention of “evidence – based” in 5.6 is unclear. It begs the question if there is a list of “evidence-based” programmes? It would maybe better to say that programmes can be run on “cause no harm” and “best outcomes” principals.

People in residential facilities should be supported to live the lives of their choice. The concept of person-centredness refers to the process of providing the right support at the right time to enable the individual to lead a life of his or her choosing as an equal citizen. Support and support services are the terms preferred used instead of rehabilitation, treatment or care.

It is suggested that these be the 5 guiding principles:

1. Quality of life:

Individuals that live in residential facilities should enjoy a good quality of life.

The facility should feel like home that upholds their personal dignity and respects there privacy. They should engage in life enhancing activities supported by staff with whom they can communicate and are sensitive to their needs and aspirations. There must be adequate shelter, food and sanitation. The facility and activities should be culturally, gender, geographically and environmentally sensitive.

2. Safety and Protection

Individuals that live in residential facilities should be safe and should not be subject to abuse, neglect, exploitation, victimization or harassment. They should be protected from discrimination and harm.

3. Rights based paradigm of service delivery

The rights of people in residential facilities must be upheld and promoted. This includes the right to be treated equally in the allocation of services and supports. This includes health care, access to justice and other constitutional rights. The licensing requirement ensures that individuals entering the residential facility do not loose these rights.

4. Community integration

Residential services should promote integration into the community with the goal to develop social networks within the communities and a move towards independent living and autonomy. Individuals that enter a facility should participate in the running of the facility and be enabled to contribute to the life of the community in accordance to their wishes and choices.

5. Responsive person centred services

Residential services should be well run and services should be organized and delivered in a manner that delivers good outcomes for individuals that live there. There should be a focus on development and this should be done by placing an emphasis on the processes of consultation and participation. It should require that service providers have mechanisms to place for monitoring and improving the quality of the services provided.

5. Application for Licensing and Inspection

What are the criteria for the selection of the “designated provincial officials” that are going to do the annual audit/inspection? This needs to be elaborated in this section.

An annual report must be produced that is in the public domain and how is it to be accessed.

The “auditors” must be able to make unannounced visits. Assessments of these visits and audits will fulfil a monitoring function and should therefore have three components:

§ analysis of the records and documentation

§ interviews with individuals, families, staff and other advocates and people with interest

§ observation of practice

These reports must be public documents and easily accessible to the public

Persons and organizations applying for licensing must comprise of individuals of good character and have not been convicted of criminal offences against the person. The licensing requirements must state the required capacity and character of those involved in the provision and management of residential services. The guidelines are silent on the criteria to assess the capacity of the providers and managers to understand rights, requirements and services to be rendered to the residential community health centres.

Minimum Requirements (8)

Instead of minimum requirements, this should be framed as Standards that the facility must comply with. These standards must be person – centred and reflect the ethos of support services and accommodation. The criteria that are needed to comply with the standards must be reflected and practiced.

Infrastructure: (8.1)

The infrastructure of the building must ensure that quality of life can be maintained.

§ It must be safe (ie. risk of fire minimized)

§ It must be large enough to ensure privacy.

§ It must be in good condition to ensure dignity of life

§ It must be close to the community.

Care processes

It is preferred if “care processes” are rather referred to as “support services”. This will indicate a move away from the paternalistic paradigm of “care” and rather the recognition that people with psychosocial disabilities and their families can reasonable expect service that is supportive of their disability. Organizations and private persons are expected to provide a service in a manner that supports the person with a disability. Supportive services must respect the autonomy, dignity and promote the wellness of the individual.

People with psychosocial disabilities need to be accommodated and this means that their disability needs to taken into account when providing services. This is what a “supportive” service is. For example 8.2.4 states that “there must be written statement of client’s rights” displayed. This is not good enough (even though the reference to “client” does indicate a shift and sounds out of place with the rest of the document.) A written statement of rights does not in anyway ensure that all in the residential facility can understand their rights. It must state that the rights are communicated to the residents on admission in an appropriate manner and best way to ensure the greatest understanding of their rights.

At no point in this section is there any reference that the admission must be voluntary and that the individual is free to leave when he or her chooses[4]. There will be cases where this happens and there is no onus upon the Organization to provide support in the decision making process[5] or obligation to assist the individual to reintegrate into community life. We cannot have a situation where involuntary confinement is allowed to occur in communities overseen by civil society. This will render residential facilities as places of detention. Thus cognizance must be taken of Article 14:

“Liberty and security of person - Persons with disabilities enjoy the same level of protection against threats to human rights, such as arbitrary detention, physical harm, and food deprivation. Any deprivation of liberty must be in conformity with the law and the existence of a disability shall in no case justify a deprivation of liberty. Persons with disabilities must be treated in accordance with this Convention, including provision of reasonable accommodation.”[6]2008

We propose that most of the “care processes” fall under the standard of “Quality of Life” which should be a minimum requirement in residential facilities. The criteria need to be determined to fulfil this requirement and made explicit in the licensing guidelines:

Standard 1: Quality of Life

Criteria

§ The individual lives in place of his or her choice and is free to leave at any time.

§ The individual that chooses to move from the residential facility must be assisted through the provision of information on services and supports available and where appropriate, the skills required for independent living

§ The individual enjoys the security of a permanent home and is not required to leave against his or her wishes unless there are compelling reasons

§ The abilities of the individual are recognized and fostered

§ The individual is supported to choose the particular supports that he or she requires to maximize the quality of his or her life.

§ The individual contributes ideas, participates in day to day activities, staff selection, is consulted about new admissions and is represented in whatever forum is used to discuss and plan the future direction of the residential service

§ Each individual is encouraged to pursue educational opportunities

§ The individual is facilitated to maintain social roles and contacts prior to admission

§ The individual is encouraged and supported to take part in and contribute towards community activities that they wish

§ Written documented policies and practices are in place to ensure that quality of life is reasonably ensured

Standard 2: Privacy and Dignity

Criteria

§ The individual has an area of personal space where he or she can be alone.

§ The individual can have safe space to keep personal belongings

§ The individual can see visitors in a private space

§ Staff consult with individuals on any issues or planned activities or changes that has implications for the privacy and sense of home of the individuals

§ Service providers and staff demonstrate respect for privacy and dignity of each individual

§ Service providers and staff treat each individual equally and do not discriminate

§ The individual’s privacy and dignity are respected at all times and with particular regard to:

o receiving visitors

o expressions of intimacy and sexuality

o consultations with social workers and health care professionals

o toilets and bathroom activities

o circumstances where confidential or sensitive information is being discussed

§ The individual receives support during illness and at the end of his or her life which meets his physical, emotional, social and spiritual needs and wishes and respects the inherent dignity and autonomy of the individual

§ The individuals’ personal preferences in relation to personal appearance are respected.

§ The individual receives appropriate support in times of emotional stress, bereavement and loss

Standard 3: Sensitive and personalized support

Criteria

§ There are an adequate number of service providers and staff who are selected that possess the appropriate personal qualities, experience, qualifications, competencies and skills

§ Persons that provide services, volunteers and staff must be fit persons that have not been found guilty of crimes against a person or have been guilty the violation of human rights

§ The licensed provider identifies the competencies and personal attributes required of service providers, staff and volunteers providing support to the individuals and recruits accordingly.

§ Background checks are done on service providers, staff and volunteers and all that is reasonably necessary is done to ensure that the staff are fit persons

§ Staff all are provided with a detailed job description and contract of employment

§ A code of conduct is signed by all volunteers

§ Staff, service providers and volunteers where necessary must be able to communicate effectively with the residents, listen and respond, make information available to them, access advocacy services when asked and maintain adequate records

Standard 4: Protection and Safety

Criteria

§ Policies, practices and procedures are put in place to ensure that individuals are protected from abuse and neglect

§ The individual is assisted and supported to develop knowledge, self awareness, understanding and skills needed to identify risks and lower their vulnerability

§ Adequate information and training is given to staff and individuals to lower risk of abuse and neglect and ensure optimum safety

§ Individuals have access to phone or alternative means of communication

§ Service providers, staff and volunteers partner with community and families to promote safety in accordance to the wishes of the individual

§ All deaths are reported in accordance with legal requirements and to the Provincial Authorities.

§ All unnatural deaths are adequately investigated and reported to the Provincial Authorities

§ There must be a non violent policy for dealing with behaviour that poses a risk to the safety of individuals and staff must be trained in conflict mediation.

§ Withdrawal of food, recreational activities, or any deprivation that impacts on the rights of the individual cannot be used as punishment.

§ Staff are trained in how to manage behaviour that poses a risk

§ All allegations of abuse are dealt with in an effective manner in accordance to a policy that must outline:

o how the individual is supported

o how the service provider responds to allegations of abuse

o the reporting mechanisms

o arrangements made to deal with incidents

§ All staff receives training in prevention, detection and reporting of abuse, the nature of abuse that is prevalent in institutional settings and understandings of people’s vulnerabilities

Standard 5 Health needs are met

Criteria

The individual is supported to live healthily and take and retain responsibility for his or her health

§ The individual is encouraged to access appropriate health information and education re:

o diet and nutrition,

o recreation,

o smoking,

o alcohol and drug use,

o exercise and

o sexual health

§ The individual is facilitated to access medical and dental health care facilities when needed

§ Medical health must be assessed annually and those with chronic illnesses and taking chronic medication must be regularly monitored and appropriate health care services accessed

§ Where an individual wishes mental health care services, it is delivered with least disruption to their daily life

§ Medical management policy and procedures must comply with legislative requirements. This includes the proper management and storage of all drugs as required by legislation

§ It must ensure that medication is never administered other than for medical reasons and as prescribed by a medical professional legally authorised to do. Administration of medication must be done by a suitably qualified person in a safe manner

§ Basic emergency equipment must be available and functional

§ Condoms must be available as well as information communicated appropriately as to safe sex

Standard 6: Person centred practices and policies

Criteria:

§ On admission, each individual is appropriately interviewed and their needs accessed for a personal plan

§ The individual is facilitated to express his/her views, opinions and wishes

§ Each individual has a personal plan that outlines his or her wishes and aspirations and the support to be provided to realize his or her personal goals

§ There should be available to the individual supportive programmes that are educational and advance skills, knowledge and enhance a sense of well being

§ The individual should have access to recreational activities

§ All activities and programmes must be based on a best outcomes practices and follow a principle of “no harm”

§ The individual cannot be forced to work and if chooses to do so, must be remunerated adequately and not exploited

§ The individual controls his or her finances unless he or she chooses otherwise. Each is facilitated to take responsibility for his/her own financial affairs if they so wish

§ The individual is given support and advice in the management of their finances and is protected from financial abuse and exploitation

§ Each individual is encouraged to participate in the political process by voting and by seeking public office

§ Each individual is encouraged to access community-based facilities and participate in community life

§ Each individual is supported to develop and maintain personal relationships and links with the community and family in accordance with his or her wishes

§ Each individual is adequately supported if wishing to enter civil unions, marriage, having children or entering family life

§ Each individual is facilitated to obtain legal advice, when appropriate

§ Each individual is supported to observe his/her religious beliefs and practices

§ Each individual is supported to make a will and/or last testament.

Medication (8.3)

See Standard 5 above

Programmes (8.4)

See Standard 6 above

Staff Training (8.6)

This must also include human rights training and counseling and debriefing services must be made available to them in situations where extreme stress occurs.

Also see Standard 4 regarding safety and protection

Collaboration (8.7).

We entirely support and applaud 8.7.1 but once again the individuals’ wishes must be seen to be the guiding force – this is a person centered approach where cultural and spiritual needs are accommodated and not decided entirely by staff when the person can articulate them or make their wishes known

Collaboration with all relevant stakeholders must also include the participation of residents. They need to be consulted in the decision making of what churches, organizations etc. come into the premises and give of services.

The ethos of the involvement of all stakeholders is supported as well as seeking an intergovernmental department approach in supporting individuals

Interaction with family (8.8)

As stated, these guidelines could seriously jeopardize the individuals’ right to privacy and well being. Permission must be sought or it must be established that it is the wish of the individual to be discussed by staff and family. It is extremely important that family relationships are encouraged and that support is given to families but this must be done with the full participation and consent of the individual and respecting their confidentiality. This should include “interested parties” as many people do not have families and community contacts and organizations could play an important role in community integration. Autonomy and move towards independent living should be nurtured and a move away from paternalism that respects the wishes of the service user.

Issue of License (9)

It is necessary that it be noted here that many existing residential facilities do not fulfill these standards and criteria and that they are immediately obligated to do so.

Conclusion

The observations and experience of Ubuntu reveal that many residential facilities are not compliant, if at all licensed and we encourage that Provincial Government liaise with mental health care advocates, representatives of people living with psychosocial disabilities and their organizations to ensure that these Guidelines for licensing are adhered to so that quality of life and health within a human rights paradigm is rendered. This will best be achieved if the principals embedded in UNCRPD and The Constitution of the Republic of South Africa is the foundation of this document. It will also fulfill Chapter 3 of the Mental Health Care Act 2002 that pertains to the rights of mental health care users.

The autonomy, dignity and promotion of the wellness of all people living with psychosocial disabilities must be reflected in these Guidelines.

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[1] “The Convention is an international treaty that articulates the rights of persons with disabilities. Specifically, States that become Parties to the Convention agree to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.pg 10”

[2] http://www.who.int/entity/mental_health/policy/development/SA%20Country%20Report%20-%20Final%

[3] “experiencing” psychosocial disability indicates that recovery is possible and that a temporary time of experiencing psychosocial disability does not always means that it is lifelong and permanent.

[4] Section 12(a) of the Constitution of Republic of South Africa no. 108 1996

[5] see Article 12 UNCRPD that ensures legal capacity and

[6] United Nations, Office of the High Commissioner for Human Rights