Caring for a Person with a Disability

While a lot of people with disabilities live independently, there are also many who live with their Carers/family. Caring for someone with a disability is often demanding and involves challenges that usually don't happen when looking after someone who is not disabled. Children and adolescents with a disabled sibling may need particular support, as their needs can sometimes be overlooked.

Some people's disabilities are more apparent to others around them and help is, or seems to be, more readily accessible. For example, if someone is blind, others will usually notice their cane or stick, if they have a Seeing Eye dog, or are reading Braille.  

However, other disabilities, for example deafness or epilepsy, may be less apparent to others, at least at first. Other people who have mental illness or intellectual disability may feel stigma, so that they may hide themselves or are hidden by their family/Carers from the rest of the community.  

Knowing how to find information and advice on accommodation, respite and day programs, special education or advocacy training can be confusing.  As well, finding the balance between providing supports and encouraging independence can be difficult for both the Carer and the person with a disability.

There are services - both government-funded and non-government agencies, which provide support to help people and their Carers, manage their disability. The National Disability Insurance Scheme (NDIS), which is gradually being introduced nationwide, has been designed to deliver disability services in a different way, aiming to provide better outcomes for people with disabilities and their Carers. See Important Links for more information about the NDIS, Disability Care and to check to see whether the person qualifies for NDIS funding.

The NSW Government's Ageing, Disability and Home Care (ADAHC), part of the Department of Human Services, provide services for Carers and families who need help and support to care for a person with a disability. See Important Links for more info or phone 9701 6300or email Metrosouth iri@facs.nsw.gov.au

Our local health district has developed a guide for people with disabilities who use
our services - see Important Links

Important Links
www.ndis.gov.au
www.adhc.nsw.gov.au      
SLHD Information for People with Disabilities

Physical Disability

A Physical disability means a person has difficulty, reduced or poor function in day to day activities we might all expect to be able to do, such as walking, holding a pencil to write, controlling our bladder etc. Some common conditions that may cause physical disabilities are:

• Limb (leg or arm) limitation or amputation
• arthritis;
• cerebral palsy;
• multiple-sclerosis;
• muscular dystrophy;
• acquired spinal injury (paraplegia or quadriplegia);
• post-polio syndrome;
• spina bifida

Key Services:
The needs and concerns of people with physical disabilities are represented by the Physical Disability Council of NSW. Their website has information for people with physical disabilities and their Carers such as equipment to help you, improving accessibility to buildings, dates of workshops and forums etc. See Important Links for further information.

Being able to drive is an important way of maintaining mobility. New standards for medical assessment were updated in 2012. See Important Links to check the fitness standards that apply. 

The Roads and Maritime Service divides driving licence applicants with disabilities into two categories: minor disabilities and serious disabilities. For minor disabilities, a licence can be issued in the normal manner. For serious disabilities, specific conditions apply. See Important Links for further information.

A NSW Taxi Transport Subsidy Scheme (TTSS) provides subsidised travel for eligible people to travel by taxi at half fare, up to a maximum subsidy of $30 per trip. See Important Links to check eligibility.  

Important Links
http://www.pdcnsw.org.au  
www.rms.nsw.gov.au/roads/licence/index.html

Hearing Impairment or Hearing Loss

When somebody is affected by hearing impairment or hearing loss, the problems resulting from communication difficulties may be profound. They can include low self-esteem, social isolation and even depression. There are a number of organisations that can provide help and resources for people with hearing impairment that can aid your communication with them.

Hearing impairment or loss, impacts not only on the person but also on the Carer and others around them. It can be frustrating for a Carer, and can even raise concerns for the person's safety. 

Common Signs of Hearing Loss
The person;

• Asks to have things repeated often
• Does not react to loud noise
• Has trouble hearing when it is noisy and in group settings
• Must be close to the person speaking
• Ignores sounds coming from behind
• Complains that people are mumbling
• Has trouble hearing when spoken to from another room
• Doesn't always respond when spoken to or responds inappropriately
• Speaks too loudly or softly in conversation
• experiences ringing or buzzing in their ears
• misunderstands conversation
• turns TV or radio volume louder in order to hear
• has trouble hearing women's or children's voices, but hears deeper tones such as men's voices (or vice versa
• strains to hear
• turns head towards the person speaking

Help for Hearing Loss/Impairment
There are organisations that can assist people with hearing impairment. Various equipment and skills training can aid in communication with the person you care for.  Even with a hearing aid, a person with a hearing loss will struggle to hear at times. The aid will assist the person, but it cannot cure the underlying problem. Your understanding and learning ways to improve communication can help the person for whom you care a lot.

The Office of Hearing Service, Department of Social Services has details on their website about eligibility requirements and service providers for government-funded, free hearing services and aids. See Important Links for further information.

As not everyone meets eligibility requirements and hearing devices can be expensive, SHHH (Self Help for the Hard of Hearing) and Macquarie University run a Hearing Aid Bank where people can be fitted with recycled and reconditioned hearing aids. See Important Links for further information.  SHHH also operates Hearing Information Centres at Turramurra and Canterbury, where you can see a demonstration of listening devices for TV and radio, telephone equipment, alarms and other communication aids. Services are free and no appointment is necessary. For more information on this service, see Important Links.

Important Links
Communication for people affected by hearing loss factsheet (PDF 404 KB)

Vision Loss or Blindness

Vision loss can be caused by a range of different factors. Someone can;

• Have eye problems from birth (congenital) which may or may not be inherited;
• Have vision loss as a result of an accident or;
• Develop a condition due to deterioration or ageing.

Some common eye problems you have probably heard of include glaucoma, macular degeneration and others caused by stroke or diabetes. Loss of sight is very distressing for the person and for the Carer, as most aspects of the person's life will change and they will probably need more assistance to manage day to day tasks.

Key Services
Vision Australia (formerly known as the Royal Blind Society) is the main non-government organisation (peak body) that can provide help to people who are blind or have low vision (vision impaired). They have resources and information that can help you and the person you care for with everyday activities and communication. Other services are also listed below.

Vision Australia's Low Vision Services focus on the issues that clients, families or Carers identify. A plan is then made of how to best help the vision impaired person. They can give advice about using magnification, lighting and contrast to help those with low vision to read, write and participate in work and leisure activities. Assessment and recommendations can be made for changes in the home and work place, and also for equipment that is needed.

Vision Australia offers programs which only require access to a landline telephone. An eight-week program provides opportunities for Carers to talk about challenges and concerns they share in their caring role. This program can be offered by telephone and as a face to face group in some locations. An ongoing support program called Telelink, for family and Carers, is a group program offered by teleconference. It provides social support, information on recreational activities and contact for people in the same situation.

Phone 1300 847 466 or see Important Links for more information.

Guide Dogs NSW provides orientation and mobility aids such as white canes and also guide dogs to help people to keep participating in work and family life. For more information about these services, see Important Links.

A vision-impaired person may be eligible for Disability Support Pension if they have been declared "legally blind" by an eye specialist. See Important Links for more information on obtaining reports. Carers may also be eligible for Carer Payment or Carer Allowance.  See Important Links for more information.

Important Links
www.humanservices.gov.au/customer/subjects/payments-for-carers

Intellectual Disability

Key Services and Supports
The Intellectual Disability Rights Service (IDRS) is a specialist legal advocacy service for people with intellectual disability in New South Wales. Their website has useful information and resources. Go to Important Links.

It is important for a person with intellectual disability to have a thorough health assessment each year. People with intellectual disability may not always know how to explain if they are in pain or feeling sick.  Behaviour changes may be a sign of ill health.

Medicare pays for annual assessments so that screening for sight and hearing, obesity, reflux, side effects from medications and preventable health problems can be detected early.  Your GP will need to schedule a long appointment to do the assessment.  For more information on assessments, see the second Important Link below.

The Intellectual Disability/Mental Health First Aid Manual is a helpful guide for parents/ Carers, giving practical ideas for supporting people with an intellectual disability who are experiencing difficulties associated with mental health problems. For more information, see Important Links.

Important Links
http://www.idrs.org.au/home/index.php
www.health.gov.au/internet/main/publishing.nsf/Content/mbsprimarycare_mbsitem_intellectual_disability

Leisure Opportunities and Disabilities

Recreation and access to entertainment and leisure is beneficial for all people. Various organisations can assist people with a disability to develop their sporting abilities, build their self-esteem and ability to participate in leisure and recreational opportunities.

Companion Card Scheme
This scheme was established to help people with a significant and permanent disability who require attendant care for the rest of their lives, in order to participate in community activities and events without discrimination. People who need ongoing attendant care support, often must pay two admission and/or booking fees; one for themselves and one for their companion. Venues or services that participate in the Companion Card scheme display a logo and will issue the cardholder with a second ticket for their companion at no charge.
The Companion Card is not means tested but eligibility criteria apply. To obtain one a person must: 

• be a NSW resident
• require lifelong support
• Have a severe or profound and permanent disability.
• be unable to participate in most community-based activities without significant assistance with mobility, communication, or  self-care planning and where  aids do not meet these needs

Ring 1800 893 044 for a Companion Card Application Form or see Important Links to download a form.   

NSW Wheelchair Sports Association (NSWWSA)
The association conducts and supports a wide range of wheelchair sporting events and programs for athletes of all ages and skill levels, both in Sydney and across most regional areas of the state. Ring 9809 5260 or see Important Links

Riding for the Disabled Association (NSW)
RDA NSW provides horse riding and associated activities to people with disabilities. Phone 9746 0950 or see Important Links.

Important Links
https://www.companioncard.nsw.gov.au/

Family Planning and Sexuality
Everybody is a sexual being with feelings. Carers, particularly parent Carers, may find this hard and prefer to regard their family member as 'childlike or non-sexual,' or see emerging sexuality as something to be feared and in need of control.  As a result, sexuality and sexual health is an often neglected aspect of life for people with intellectual disability. 

Inappropriate sexual behaviour, or even sexual abuse, is more likely when suitable opportunities for sexual expression have not been addressed or education given about the complicated social rules that govern sexual behaviour and relationships. Free advice and resources that show how to discuss sexuality issues are available from the Family Planning Association for parents/Carers. See Important Links for information on education and resources from Family Planning.  

Important Links
www.fpnsw.org.au/disability

Multicultural Disability Services

The Multicultural Disability Advocacy Association of NSW (MDAA)
MDAA provides advocacy services and undertakes projects for people from culturally and linguistically diverse (CALD) backgrounds with disability, their families/Carers, and service providers in NSW. They bring together information in community languages about disability, community services, rights and other related areas. See Important Links.

Transcultural Mental Health Centre (TMHC)
TMHC is a state-wide service that promotes access to mental health services for people of CALD backgrounds.

It runs a support program for Carers from Cultural and Linguistically Diverse (CALD) backgrounds who care for someone with a mental health problem. They provide assistance to Arabic, Cantonese, Mandarin, Farsi, Greek, Korean, Khmer, Maltese, Spanish and Turkish speaking communities.  Bilingual Group Leaders run language-specific support groups for CALD Carers across the Sydney metropolitan and Wollongong areas.

Phone: 9912 3851 or 1800 648 911 (Toll free) or see Important Links.

To find groups by language and location, contact the Support Program Officer for Carers of CALD Backgrounds: Email: Ramy Var

Ethnic Community Services Cooperative (ECSC)
ECSC provides bilingual support staff that can assist refugees and children from CALD backgrounds with cultural and language supports when attending childcare, vacation or after school care services.

For more information see Important Links.

Some Multicultural Respite Services (MRS) can also be provided. Call MRS Coordinator/Project Officers on 9569 1288 or email: mrs@ecsc.org.au

Important Links
Transcultural Mental Health Centre 

Information about disability on these pages is drawn from the websites of the relevant state or national peak organisations or from the websites of the organisations actually named.