Below is a list of some terms and expressions you may read about or hear in connection with Angelman Syndrome.
Augmentative Alternative Communication (AAC)
Any form of non-verbal communication, eg facial expression, gestures, sign language, pictures, language systems.
Advocacy is the process of negotiating until a resolution has been reached either in favour or against. An advocate is anyone (eg 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.
Case Management – Case Manager/Case Worker/Key Worker
With Angelman Syndrome, there are two professionals who most typify the role of case manager – the GP 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. A case worker may also be a social worker who will help you access direct payments or respite.
This is 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.
Disability Living Allowance (DLA)
A payment made to a person under the age of 16 in the UK who meets specific criteria in requiring additional aspects of over and above the needs of a person the same age who doesn’t have any disability. There are two components, care and mobility. There are different levels (low middle or high).
Specifically in the area of intellectual or physical disability, early intervention involves providing medical services at an early age in areas such as physical therapy, occupational therapy and speech and language therapy (SaLT). Often these services are provided in your home or are centre based, such as a community health centre.
Education, Health and Care Plan (EHCP)
An EHCP is for children and young people aged up to 25 who need more support than is available through special educational needs support. EHC plans identify educational, health and social needs and set out the additional support to meet those needs. You can ask your local authority to carry out an assessment if you think your child needs an EHC plan. A request can also be made by anyone else who thinks an assessment may be necessary, including doctors, health visitors, teachers, parents and family friends. If the decision is made to carry out an assessment you may be asked for:
- reports from your child’s school, nursery or childminder
- doctors’ assessments of your child
- a letter from you about your child’s needs
The local authority will tell you within 16 weeks whether an EHC plan is going to be made for your child. In Wales, Individual Development Plans (IDP’S) have taken the place of statements. Scotland has Co-ordinated Support Plans (CSP’s). For further information contact your Local Education Authority.
Your child may be referred for this to measure their brain pattern if seizures are suspected, or seizure activity changes. Wires are attached to the head and a tracing of electrical activity is produced. You may be asked for this to be done whilst your child is awake or asleep or both.
Generally an environment is either a physical structure or an emotional state or one which causes emotional stimulus.
-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 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 affects 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.
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 or a long-term friend. 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.
IP – Individual Plan used by service providers in accommodation, day program, supported employment and case management areas
IEP – Individual Education Plan used by schools
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.
Speech and Language Therapist (SaLT)
A person who will work with your AS individual to improve their communication skills, ideally through a multi-modal approach (using every tool available).
A person or organisation that provides a service, covered by a funding agreement with the local government.
The time between moving from the provision of services for a child to the provision of services for an adult. In the UK, this usually happens when the child turns 18, although preparation for it may begin sometime before this.