A TIMETABLE FOR GROWING UP WITH AN ACQUIRED DISABILITY

Children’s individual abilities will vary but all children should be encouraged to set achievable goals and do their personal best. As a parent, have realistic expectations for your child and encourage them to expect the best for themselves.

At times you may feel overwhelmed or caught up in daily routines. It may be difficult to think of tomorrow when you are just making it through today. But when you take a moment to catch your breath, it can be helpful to remember these transitions and how they may impact on your family’s future.

As your child grows, continue with the suggestions from earlier years and add new activities and responsibilities as appropriate.

As children grow up they progress through many different stages of development. These times of change are often called transitions. These changes can occur when they start kindergarten, when they enter high school and become teenagers, and as they progress towards adulthood. Each new stage may involve different teachers, friends and care providers.

To be prepared for these transitions and changes, planning must start early. Planning should be a positive experience with shared expectations, hopes and dreams for the future.

This Timetable for Growing Up provides some ideas and thoughts for planning ahead. It also includes suggestions to help your child become more independent and confident with their development, health care and disability-related needs as they grow up.

* Adapted from “A Timetable for Growing up with Spina Bifida”, developed by Sydney Children’s Hospital Spina BifidaClinic November 2009 and “A Timetable for Growing Up”. Life Skills Institute, Holland Bloorview Kids Rehab, Toronto,ON. Adolescent Health Transition Project, University of Washington.

To find out about support for children with a disability, go to www.health.nsw.gov/ndis

SHPN: (GR) 190252ISBN: 978-1-76081-140-2Version: 1.0

TIME OF DIAGNOSIS BIRTH TO 3 YEARS 4 TO 6 YEARS 7 TO 11 YEARS 12 TO 16 YEARS 17 AND BEYOND

What you can do within your child’s abilities: Within your child’s abilities, you can assist them to:

Parenting and Emotional/Behavioural Support

• Apply for child and family allowancesthrough Centrelink.

• Join parenting groups and access otherparental supports.

• Let your child know the world is a goodplace.

• Enjoy your child, have a good time.

• Take short breaks from your child torenew your energy.

• Support your child’s emotional andbehavioural development.

• Establish family rules and set limits.

• Give your child appropriate choices, sothey learn to make decisions.

• Teach your child the consequences oftheir behaviours and choices.

• Teach your child about personal safetyand protection.

• Let your child make mistakes.• Teach your child to speak up for

themselves.• Promote independence and self-

confidence. Take time to let your childdo for themselves whatever they areable to do and try new things.

• Revise your family rules and set limits.

• Advocate for themselves.• Talk about sexual development and

relationships.• Look for older role models.• Use parents and other carers as a

resource.• Enquire about additional allowances and

benefits through Centrelink.• Reapply for benefits through Centrelink

before they turn 16.• Apply for their own Medicare card (from

15).• Revise your family rules and set limits.

• Become a mentor or resource foryounger children.

• Start thinking about guardianship, ifrelevant.

• Useful resources: TAD (Technical Aid tothe Disabled), Family Planning NSW.

Social • Get involved in community activities (e.g.playgroups) that include children withand without a disability.

• Talk to families of children with andwithout a disability.

• Enquire about eligibility for: disabledparking permit, taxi vouchers andCompanion Card.

• Take your child to playgrounds, parksand social events.

• Let your child explore what they like todo by exposing them to different leisureactivities.

• Invite families with children your child’sage to your home to play.

• Encourage hobbies, sport and leisureactivities.

• Encourage your child to make friends.

• Support your child’s participation incommunity activities, without parents,when possible.

• Join teams and social clubs at school.

• Become involved in activities outside ofschool.

• Hang out with friends.

• Access appropriate online communitieseg. www.livewire.org.au

• Access mentoring programs

• Find out about community programs foradults that match their leisure or athleticinterests.

• Keep in touch with friends from highschool or social networks and makeplans.

Self Care • Work with your child to develop andimprove upon their self-care skills at anage-appropriate level.

• When your child develops an awarenessof wet or soiled nappies, you mayconsider toilet training, if appropriate fortheir abilities. Your child may need extrasupport.

• Teach your child self-care skills relatedto their special needs e.g. brushing theirteeth.

• Give your child chores that areappropriate for their abilities.

• Take your child shopping and on publictransport.

• Teach your child their personalinformation such as address and phonenumber.

• Let your child choose how to spendand save money e.g. pocket or birthdaymoney.

• Direct their own personal routines.

• Learn to cook (with family or at school).

• Start to find their way around thecommunity.

• Talk with their parents/carers aboutwhere they will live as an adult.

• Consider learning to drive.

• Continue to develop independent livingskills.

• Plan and prepare meals.

• Practice budgeting and banking skills.

• Look into housing choices (includinghome and community care).

Education • When your child is ready to return topre-school or school request a meetingwith teaching staff and cliniciansbefore they start, to discuss your child’sindividual needs.

• Keep a record of your child’s educationalhistory and maintain regular contactwith their teachers.

• Promote developmental activities e.g.play with your child, read to them andlisten to music together.

• Make enquiries at your local pre-schoolsto prepare for enrolment and discuss anyspecial requirements.

• At approximately 3 years of age contactthe Department of Education, CatholicSchools or Independent Schools todiscuss your child’s special needs beforestarting school.

• When enrolling your child for schoolrequest a meeting with teaching staffbefore they start, to discuss your child’sindividual needs.

• Keep a record of your child’s educationalhistory and maintain regular contactwith their teachers.

• Let your child do their homeworkindependently, and support your childwith homework by letting them tell youwhen help is needed.

• Begin asking your child what they wantto be when they grow up.

• Contact your child’s primary school andprospective high school well in advanceto discuss your child’s special needsin preparation for transitioning to highschool.

• Take part in meetings about theireducation and keep a record.

• Talk about career interests.

• Find volunteer work or a part time job.

• Investigate post school programs.

• Contact Centrelink for help with jobsearch and training.

• Investigate post school education,training and employment opportunitiese.g. work that interests them, TAFE,university or private colleges.

Health • Develop good relationships with yourGP, medical specialists and other healthprofessionals.

• Keep a record of your child’s medicalhistory and keep copies of reports andresults.

• Develop good relationships with yourGP, medical specialists and other healthprofessionals.

• Keep a record of your child’s medicalhistory and keep copies of reports andresults.

• Teach and educate your child abouttheir disability and special needs, ata level appropriate to their age anddevelopment.

• Ask your child what they know abouttheir disability and fill in the gaps in theirunderstanding.

• Help your child talk directly with doctorsand health professionals.

• Begin to look for adult health careproviders.

• Attend some of their medicalappointments alone.

• Start to make their own medicalappointments and keep a record of theirmedical history.

• Consider mental health support e.g.www.beyondblue.org.auwww.reachout.com.au

• Get referred to or make contact with aTransition Care Coordinator.

• Transfer to an adult health careprofessional (GP or rehabilitationspecialist).

• Get a copy of their discharge summary,X-rays and scans.

NDIS (if rele-vant to your child)

• Work with your supports to prepare forthe planning meeting and to implementyour child’s first NDIS plan.

• Consider what might be required in allthe areas of:– Core Supports– Capital Supports– Capacity Building Supports.

• Ensure supports required for your child’sdevelopmental and disability needs aremet.

• Prepare for transition from EarlyChildhood Early Intervention (ECEI)Partner to Local Area Coordinator(LAC)/ National Disability InsuranceAgency (NDIA) Planner for planningafter 6 years of age. Ensure you haveevidence of your child’s disabilitydiagnosis (e.g. a clinic letter with yourchild’s disability stated).

• Consider extra supports to help yourchild get the most out of school, andworking your child’s supports aroundschool hours.

• Consider supports for skills which mayno longer be considered age appropriate(e.g. continence consumables at age 5years).

• Transition from ECEI partner to LAC/Planner. To continue on the NDIS,evidence of permanent disability isrequired at 7 years.

• Planning meetings will now occur with aLAC or NDIA Planner.

• Start to think about what extra supportsmight be required to successfullytransition to high school (e.g. Willtherapists need to liaise with school?).

• Start to prepare information and goalsand attend their own NDIS planningmeetings.

• Consider who will continue to attendtheir planning meetings.

• Consider whether NDIA need to beadvised of a formal guardian.

• Consider a potential need for:

– Supported Independent Living (SIL)– Specialist Disability Accommodation

(SDA)– School Leaver Employment Supports

(SLES).

• Consider which informal supports aregoing to continue into adulthood.