Needs of Specific Groups of Disabled or Older People

Needs of Specific Groups of Disabled or Older People Outlining the impairments, conditions, rights, and needs of specific groups of disabled or older people Rhojoesa Bingayen 3.1-3.3  A. People with autism spectrum disorders (ASD)   Autism Autism is a complex developmental disorder of brain function accompanied by a broad range of severity of intellectual and behavioural deficits. It usually begins within the first two-and-a-half years of a child’s life (Gillberg et.al., 2011). It causes affected children to experience the world differently from the way most other kids do. Autistic children often appear normal physically but their behaviour may often times seem strange and disturbing as compared to normal children. Autism is marked by three prominent symptoms, which are – impairments in social interaction, impairment in communication, and repetitive behaviour. Children with autism display extreme odd behaviours in the sense that they might either be overly aggressive or abnormally passive. They do not connect with other people around them and do not reciprocate to communication verbal or nonverbal. Their social expressions are limited to extreme display of emotions like screaming, crying or laughing profusely with infrequent signs of subtle expression such as smiling or frowning. They do not establish and maintain eye contact when communicating. They develop routines and are resistant to changes in their routines, they get upset when their routines are broken. People with autism tend to exhibit compulsive behaviour and develop ritualistic behaviour in their daily routine. Common repetitive behaviours include hand-flapping, head banging, rocking, jumping and twirling, arranging and rearr anging objects and repeating sounds or words. Consequences a. Individual Discrimination due to an autistic childs abnormal behavior, people around him may discriminate him, brand him as crazy and they may have prejudgements about him. Isolation because he is being discriminated upon, he may further isolate himself and not connect with other people anymore Potential for neglect because of his inability to express himself, his family and carers may not know what he wants or needs leading to neglect Potential for abuse due to his difficult behaviour, his family and carers may be frustrated leading to potential physical or verbal abuse Low self-esteem because he is different from others, his self-esteem may become lower Potential for self-mutilation his repetitive and unusual behaviours may result in harming himself. If he is disrupted from his routines, he may throw tantrums and hurt himself. b. Family Stress constantly caring and managing the difficult behaviour of an autistic child can be very stressful to the family Exhaustion – the physical demands of caring for an autistic child can be very tiring leading to exhaustion. Autistic children often have disturbed sleep pattern and they need constant supervision which is physically exhausting. Burn out – constant exposure to stress and exhaustion can lead to burn out of the family. They may feel isolated and depressed and may reach breaking point if they don’t get help. Guilt – the parents may feel feelings of guilt and blame themselves for the condition of their child. Embarrassment because of the unusual behaviour of the autistic child, the family may feel embarrassed especially when they are in public places Isolation – due to embarrassment, they may opt to stay at home and not socialize anymore Financial problems – autistic children may need more for his needs, therapies and medications and the family may struggle with their finances. c. Carers Stress – constantly looking after an autistic child and managing his unusual behaviour can be very stressful to the carer. When the child’s routine is disrupted and he gets very upset, he may throw tantrums putting the carer under stress. Exhaustion – physical demands of caring for an autistic child is tiring and can lead to exhaustion. The child may be overly passive or overly active and they may be very difficult to handle leading to exhaustion. Burn out – constant exposure to stress can lead to burn out. This may cause the carer to lose interest in taking care of the child leading to neglect and abuse. May give up job – the carer may be unable to cope with the challenging behaviours of the child and may give up caring for the child Impact on the diverse dynamic of the family Autism affects not only the individual but the whole family. An autistic child may have unusual behaviours, difficulty expressing himself and difficulty connecting with people. This can cause parents to have a hard time accepting the child’s condition and they may feel very frustrated of not being able to connect with their child. Autism may be very overwhelming for them and they may feel very depressed about the condition of their child. Stress due to unusual behaviours can lead to burn out and feelings of emptiness. They may feel anger, resentment and guilt. All the family members may feel isolated and helpless and they may neglect themselves putting forward the needs of their autistic child. Autism can either bind the whole family giving support to each other while caring for the autistic child or the constant exposure of the family in a stressful environment may lead to their falling out as a family. Code of Rights Right to be treated with respect Even though a child is autistic, he is still a human being and has the right to be treated with respect whatever behaviour he may display. Even if he cannot express himself, he still has the right to have his own privacy respected. Right to freedom from discrimination, coercion, harassment and exploitation His unusual behaviours make him prone to discrimination and his inability to connect and communicate with people can lead to exploitation and abuse. People should bear in mind that he is a human being and have the right to freedom from discrimination, coercion, harassment and exploitation. Right to dignity and independence Family and carers must ensure that his dignity and independence is upheld. As much as possible promote independence to the child, encourage him to do things to increase his self-esteem and dignity. Right to services of an appropriate standard The family should be made aware of the services that they can tap for the benefit of their autistic child. The child should not be denied of services appropriate for him and his family to optimise their quality of life. He is entitled to early intervention services and special education. Right to effective communication Due to inability to express himself, people should try all means to communicate effectively with him so that he may understand information conveyed to him. Right to be fully informed Even if he cannot communicate effectively, an autistic person together with his family still have the right to be fully informed of whatever procedure or services that will be done to him. Right to support The need of an autistic child is different from normal kids and they may need enormous amount of support. As an individual, they have the right to be given the support that they need. Support needs Autistic children need early and life-long intervention to manage their behaviour and enhance their communication skills. Early intensive behavioural therapies in young autistic children are effective in improving their social and communication skills and it can promote their independence as an individual. There are support groups that are available for families and their autistic child so that they can better deal with autism and optimize their lives. These groups provide counselling, behavioural therapies, accommodation and supported living, respite services, training and education, and day services. These groups are: Autism Parent Support Group Autism Therapy Groups Autism NZ Altogether Autism Mental Health Foundation NZ Intellectually Handicapped Children (IHC) Ministry of Education District Health Boards B. People with dementias 3.1-3.3 Dementia According to Alzheimer’s New Zealand (2012), â€Å"dementia occurs as a result of physical changes in the structure of the brain†. These changes can affect memory, thinking, behaviour, personality and emotion. Because dementia is a progressive syndrome, symptoms will gradually worsen. Plaques and tangles form in the brain and spread through the cortex as dementia progresses causing the nerve cells to die. The plaques and tangles disrupt the messages within the brain, damaging the connections between the brain cells. The brain shrinks due to loss of nerve cells, the cerebral cortex (gray matter) become less and the spaces between the cells become wider thus losing communication between the nerve cells. This leads to slower or no reaction at all and loss of ability to think and make decisions. The disease is characterized by gradual memory loss; decline in ability to perform tasks; impairment in cognitive functioning like impaired judgement, decision-making, abstract and logical thinking; disorientation; changes in mood and behavior; and loss of language skills. Consequences Individual Confusion – due to his loss of memory and inability to recognize things, he may be confused with all the things and people that surround him and this may cause him to be anxious and show challenging behaviours Frustration – because of his difficulty remembering and expressing his thoughts, he might be upset and frustrated with himself Display difficult behaviours – to compensate for his inability to express and communicate effectively, he may display difficult and aggressive behaviours to try and express what he wants Potential for self-injury – his inability to recognize dangerous things may pose harm to him and his constant wandering and not finding his way around can also pose danger to him Isolation – because he have difficulty remembering people, he might isolate himself or the people around him might not connect with him Potential for self-neglect as dementia progresses, he will become slower and more confused and may need constant reminding about his need to eat, to drink, to go to the toilet or have a wash and get dressed. Potential for abuse – when he displays difficult behaviour, his family and carers may get frustrated and irritated which can result to physical or verbal abuse Family Stress Constantly caring for a dementia client everyday can be stressful to the family especially the family member who is assigned to take care of the client. This can be physically and emotionally tiring leading to exhaustion and burnout Frustration when the client shows challenging behaviours, the family may feel frustrated and irritated because they may not know how to handle him Isolation – because they have to constantly look after the client, they may lose relationships and social contacts which can lead to isolation. They may also feel embarrassed with the odd behaviour of the client causing them to isolate themselves. Depression – the condition of the client may cause them sadness and depression, the loss of the person they once knew can result to feelings of loss and grief Financial problem – the family may not be able to constantly look after the client and may hire a carer or put him to a nursing home which can drain their resources Role changes – the family may have to assume the role the client used to have like if he is the head of the family, his spouse or eldest child may have to manage their finances and decision making. Carers Stress – Because dementia clients cannot communicate effectively what they need or want, they may display difficult behaviours to express themselves. The healthcare worker may have difficulty understanding the client which can put them under stress. Exhaustion Constantly working and looking after a dementia client is very physically demanding and this can result to tiredness and exhaustion. Challenging behaviour of the client, wandering around, incontinence and inability to communicate properly can be very stressing to the healthcare worker. Burnout – constant exposure to stress can lead to burn out and they may lose interest in taking care of the client. Potential to abuse client – due to the challenging behaviour of a dementia client, they may also become aggressive and violent, the carers may lose patience which can result to abuse of the client physically or verbally. Impact on the diverse dynamic of the family The family may go through a lot of emotions upon diagnosis of a family member with dementia. The client may be oblivious to what is happening around him due to memory changes and it is the family that will go through the process of loss and grief. The family may grieve over the loss of the person they used to know and love, they may grieve over the loss of relationship, or they may grieve over the loss of the future they have planned together. The difficult and challenging behaviour of the client can put them under so much stress which can lead to exhaustion or burn out. Taking care of the client with dementia everyday can be overwhelming for them and may either strengthen their family or weaken them. Code of Rights Right to be treated with respect A dementia client has the right to be treated with respect whatever behaviour he may display. Even if he cannot express himself, he still has the right to have his own privacy respected. Right to freedom from discrimination, coercion, harassment and exploitation His unusual behaviours make him prone to discrimination and his inability to connect and communicate with people can lead to exploitation and abuse. People should bear in mind that he is a human being and have the right to freedom from discrimination, coercion, harassment and exploitation. Right to dignity and independence Family and carers must ensure that his dignity and independence is upheld. As much as possible promote independence and encourage him to do things for himself to increase his self-esteem and dignity. Right to services of an appropriate standard The family should be made aware of the services that they can avail for the benefit of the dementia client. He should not be denied of services appropriate for him and his family to optimise their quality of life. Right to effective communication Due to inability to express himself, people should try all means to communicate effectively with him so that he may understand information conveyed to him. Right to be fully informed Even if he cannot communicate effectively, the client should still have the right to be fully informed of whatever procedure or services that will be done to him. Right to support The client has the right to be given the support he needed and be supported by carers of his choice. Support needs Dementia clients have varying needs according to the severity of their disease. Some may need constant reminders only due to their memory changes and some may need full assistance because they have forgotten how to do their ADLs. Dementia is a progressive disease and as the client’s condition worsens over time, they may need constant support and care throughout the course of their disease. Dementia not only affects the individual but also his family and carers, this is life-changing for all of them. They may need people who can truly understand what they are going through. There are support groups available for families and carers where they can connect and access services. These groups provide counselling and stress management techniques; provide support system like personal care, domestic care and carer support ; share knowledge and information on how to effectively manage challenging behaviours; provide education and training; provide links to resources available in the community like facilities/institutions who provides respite care, day care services, sitting services and others. These groups are: Alzheimer’s New Zealand Age Concern Residential care Facilities Home Based Services Health and Disability Commissioner Citizens Advice Bureau Work and Income Ministry of Health District Health Boards 3.4 References Alzheimer’s New Zealand (2012). Retrieved from http://www.alzheimers.org.nz/about-dementia/what-is-dementia#sthash.tFkup8ng.dpuf Autism Speaks Inc. (2014). Autism and your family. Retrieved from http://www.autismspeaks.org/what-autism/autism-your-family Careerforce (n.d.) Community support services for people with dementia. Retrieved from http://ilearn.careerforce.org.nz/mod/book/view.php?id=272 Gillberg, C., Hollander, E., Kolevson, A. (2011). Textbook of Autism Spectrum Disorder. Virginia, USA: American Psychiatric Publishing Inc. Rhojoesa BingayenPage 1