Jargon in the Disability Sector

Yes we hear jargon all the time. Sometimes I have to ask what so and so means and I have worked in many areas of disability support for nearly 6 years!

This is another ongoing project, which I am hoping to complete after consulting with families to see what terms they have heard that they would like more information about.

This project will not cover medical terms as I see that as a separate issue and this information is best obtained from the doctor or specialist who used the terminology in the first place.

Jargon or Term	The Meaning of this is
Accommodation Service	A Service Provider that oversees the provision of services in either providing support for independent living or providing accommodation in a home with various levels of support for the residents. INDEPENDENT LIVING ACCOMMODATION This generally involves someone with a disability who lives independently in the community. The accommodation is either leased/bought on their behalf without any staff support or with minimal staff support called drop in support (as little as 2 hours per day for areas such as personal hygiene, meal preparation or general house cleaning). Accommodation includes boarding houses, units or a house. SUPPORTED ACCOMMODATION This is accommodation provided by the service provider, which involves living with people with similar needs. This may be in a unit, a flat attached to a group home, a duplex, a group home or a large residential service. With a child this may also include living with a (foster) family in their home, this is the preferred model of accommodation support for children. Support staff are provided to support the residents in areas between their capability and full independence. This can range from 4 hours per day on weekdays for people with a mild to moderate intellectual disability. The range goes on to full support for 7 days a week with sleepover staff (staff who sleep in a room/office attached to the residence overnight), with staff being on duty at times when residents are normally awake. This caters for people with a mild/moderate to moderate/severe intellectual disability. For people with a severe or profound intellectual disability or severe physical disability there is 24-hour support involving staff being on duty at all times. It may also include multiple staff members being on duty at various times. PLEASE NOTE: Service Providers may not be able to provide support in all areas described above. Some only cater for mild or mild/moderate intellectual disabilities. Others only cater for specific disabilities or high support needs.
Advocate/Advocacy	An advocate is a person who may be a family member, support staff, service management, a friend or an independent member of the community who actively negotiates on behalf of a person with a disability. The advocate may be trying to obtain a service, a particular aspect of a service, supporting someone in ensuring that his or her individual or civil rights are being upheld. Independent advocates should be trained so that they can achieve the best possible outcome/result for the person they are negotiating on behalf of. Organisations such as Citizens Advocacy can provide advice and information as well as help to find an advocate. Advocacy is the process of negotiating until a resolution has been reached either in favour or against.
ATLAS (Adult Training, Learning and Support)	A State Government program for support that assists the adult with a disability (generally from the age of 20 years) to acquire the necessary skills to be as independent as they can in living in the community and being a member of the community. Some of these adults will acquire enough skills to move on to employment either with or without long term support. ATLAS Reform will remove the barriers that prevent people with disabilities from accessing the jobs, training and community access services they need. It will deliver greater flexibility to meet the needs of individuals, their families and carers. Source - Department of Ageing, Disability and Home Care (NSW) 2001
Case Management - Case Manager/Case Worker/Key Worker	With Angelman Syndrome there are two professionals who most typify the role of case manager - the family doctor who determines that certain specialists are needed then refers the patient on to them. They then provide the follow up support on an ongoing basis - typical of a case manager. Another example is a paediatrician who performs a similar role in referring to and consulting with neurologists, occupational therapists, physiotherapists etc on a regular basis. Other terms for a Case Manager are CaseWorker or Key Worker. When services are provided in the accommodation or day program sectors then each of these will appoint a Case Manager to oversee the IP as well as obtain support from medical and other professionals for the individual. The Case Manager maybe a support staff member or someone in service management, dependent on the Industrial Award in place.
Challenging Behaviour (Also Severe Challenging Behaviour)	Source - A Positive Approach to Challenging Behaviours (ADD 1997) ...the behaviour of a person with a disability is of such intensity, frequency or duration that the physical safety of the person or those nearby is put at risk. The behaviour may also limit the person's ability to participate in daily life and enjoy the wider experiences. Challenging behaviour is something that is seen, felt or heard that is not socially acceptable conduct. Severe challenging behaviour involves physical or verbal abuse that can cause harm.
Consent	Nothing too mysterious with this one. A person agrees to something being done for or by them. Ironically a person with a challenging behaviour has to give consent for a Behaviour Intervention Plan and the associated documentation being done! (Compare that with someone being found guilty of a crime consenting to the magistrate or judge implementing a Behaviour Intervention Plan - by sending them to jail!!!!!). Where the consent involves issues of Duty of Care, Negligence and Dignity of Risk, then it needs to be Informed Consent. In this case the person needs to be able to form an opinion based on their understanding the information, which is given to them in a way that is easiest for them to understand. If a person with a disability communicates with PECS or sign language then the information would be given to them in this format. This is called Informed Consent. If an adult with a disability is unable to make a decision based on Informed Consent then someone such as his or her primary caregiver (a family member) may be appointed as guardian for this process. In the absence of a family member a Public Guardian may be appointed to perform this role. You can find more information about the meaning of consent at the Villamanta Legal Service website http://www.villamanta.org.au/legal/free_information/ capacity_and_consent.htm There are areas involving medical procedures, which require that the matter be referred to a court or to a Guardianship Tribunal for consent. Contact the relevant body in your state for more information about this.
Day Programs	There are a multitude of different programs covered by this term. The one common factor is that they operate during the weekdays in the daytime. Some of the programs are Independent Living Skills/Training (ILS/ILT), Community Access Service (CAS), Post School Options (PSO), Adult Training, Learning and Support (ATLAS). Some are centre based where the person with a disability accesses different programs from the centre or at the centre itself. Others are home based where the person stays at home for all programs and is taken out into the community for those programs that are based in the community. Whether the service is centre based or home based depends on how the service provider operates their service and support structure. Typically the programs involve different aspects of the persons life such as daily living skills, social skills, communication, self care, community access/use, functional academics (numeracy and literacy), leisure and vocation. The program does not cover supported employment, but can provide training which will provide the skills to go on to supported employment.
Dignity of Risk
Disability Services Act (DSA) and the accompanying Disability Service Standards (DSS)	The Act in each state covering the provision of services to people with a disability by service providers. The Commonwealth also has a DSA covering the services, which are administered by the Department of Family, and Community Services (FACS). The DSS (generally 10 standards) cover how a service will work with or provide support on a daily basis and may cover the following areas (NSW Standards are used in this example) Service Access Individual Needs Decision Making and Choice Privacy, Dignity and Confidentiality Participation and Integration Valued Status Complaints and Disputes Service Management Family Relationships Protection of Human Rights and Freedom from Abuse The Commonwealth DSS are similar other than extra standards covering the supported employment/work environment.
Dual Diagnosis	Specifically in the area of intellectual disability. I say this, as there are other areas in the Health sector using this term as well. When a person with an intellectual disability is diagnosed with having a long term mental illness by a psychiatrist then they are classified as having a dual diagnosis of an intellectual disability and the mental illness. This does not apply when the mental disorder is Autism, as the primary diagnosis will always be an intellectual disability.
Duty of Care	For an excellent explanation of Duty of Care visit the Villamanta Legal Service website. Click on the link to go to the specific page on their site. http://www.villamanta.org.au/legal/free_information/ duty_of_care_and_negligence.htm
Early Intervention	Specifically in the area of intellectual or physical disability. Again, there are other areas in the Health sector using this term as well Early Intervention involves providing medical services at an early age in areas such as physical therapy, occupational therapy and speech therapy. Often these services are provided in your home or are centre based, such as a community health centre.
Environment	Generally an environment is either a physical structure or an emotional state or one which causes emotional stimulus. (So much for making jargon easier to understand!!) PHYSICAL This can be a room such as a doctor's surgery, a living room, and a classroom. It may also be an open area such as a car park, a school playground or even a sports stadium. EMOTIONAL This is more difficult to explain. It can be the presence of a person or people that affects a person's emotional stimulus in either a positive or negative way. If a person is in the company of another person or a group that they do not want to be with, then they will want to get away, if they can't then this impacts on them in a negative way. Therefore the environment is negative. It can be something that happens that affect's a person's emotional stimulus. For example hearing a specific song can be good or it can be bad, depending on the feelings that it generates in the person who is hearing it. They may have fond memories associated with the song, which makes them glad to hear it, so the environment is positive.
Group Home	A home provided by a service provider that has between 1 and 7 residents. Each resident has their own room and generally shares other facilities such as laundry, bathroom, toilet, kitchen and common living areas. The Service provides staff support based on the individual needs of the residents. Support staff assist in skills training, support in areas that the individual residents need assistance, community access, individual financial management as well as assisting with the overall operation and maintenance of the home. Group homes can be a unit, a home in a community residential setting, a granny flat attached to a group home, a duplex that caters for differing support needs and sharing of staffing resources between the two residences. Any residential larger than 7 bedrooms would have to be classed as a large residential or an institution, in my opinion. How many 7 bedrooms houses other than multiple occupancy dwellings do you see in your real estate agents window??
Guardian/Guardianship	A guardian is appointed when an adult with an intellectual disability is unable to manage their affairs in one or all of the areas of accommodation, medical or finance. The Guardian may be a family member, a long-term friend or a Public Guardian. The Guardian is appointed by a hearing of the Guardianship Tribunal following an application by "someone" who identifies that a Guardian is needed. This is not always a family member. The appointment of a Guardian does not usually occur in the case of children unless their parents are not the primary caregiver. Guardianship is the process that a Guardian goes through in making their decisions. For more information click on the link to go to the guardianship page of the Villamanta Legal Service website http://www.villamanta.org.au/legal/free_information/ Medical_Treatment_and_Guardianship.htm
Individual Plans (various acronyms include IP, IEP, IPP, IRP, ISP, ITP, IVP)	IP - Individual Plan used by service providers in accommodation, day program, supported employment, case management areas IEP - Individual Education Plan used by schools IPP - Individual Personal Plan used by service providers in accommodation, day program, case management areas IRP - Individual Recreation Plan - used in areas of recreation support. ISP - Individual Service Plan used by service providers in accommodation, day program, supported employment, case management areas ITP - Individual Training Plan used in training and areas of supported employment IVP - Individual Vocational Plan used in the supported employment area. IP's are plans that are developed to outline the goals and achievements that are being aimed for within a specified time. In the case of education, accommodation, employment, day programs and training these will usually be for a 12-month period. In case management they will be for an agreed period for example 3 months, 1 month, usually no longer than 6 months. The goals can include accessing specific medical or therapeutic resources, a holiday, a daily living skill, a recreational activity or a specific skill or job in the employment or education/training areas. To meet their funding obligations, service providers put these plans together and provide the support for the person concerned to achieve the goals that have been agreed to in the plan.
Non Government Organisation (NGO)	A community based organisation with it's own management structure. The organisation may receive some or all of its operating funds through a government department known as the funder, however it is accountable or answerable to its stakeholders - the people who stand to benefit or lose by its actions. The funder is one of those stakeholders.
Programs	Thinking of this term reminded me of the small booklet size explanation that I wrote as part of the policies and procedures of one of the organisations that I previously worked for :-). You'll be happy to read the highly condensed version, I'm sure.
Respite	Respite is used to enable the primary caregivers (parents, foster carer, guardian or the person/s who have the main responsibility of providing care and support to a person with a disability) to have a break and vice versa. This may be for a short period so that they can go and do the family shopping or overnight, for a couple of days or for periods generally up to a week. There are two types of funded respite as well as different service providers offering them. IN HOME RESPITE This service is provided in your home and is generally provided by your State Government through programs such as Home and Community Care (HACC) in NSW or Care Connect in Victoria. The service allows you to have a break to go shopping, for example, while your son or daughter is being cared for in a familiar environment. CENTRE OR COMMUNITY BASED RESPITE These are provided from premises operated by a service provider. The service provider can be either a Non Government Organisation (NGO) or a disability specific government agency. The service may provide respite for short periods similar to day care to overnight accommodation and care over several nights.
Service Provider	A person or organisation that provides a service, covered by a funding agreement with the State or Commonwealth Government, in the area covered by the Disability Services Act (DSA). Each State and the Commonwealth have their own DSA's, however the main difference is in the terminology used.
Supported Employment
Transition (Plan or Time of)