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Library Collection - Adults & Ageing

DOWN SYNDROME NSW LIBRARY COLLECTION

The Adult with Down Syndrome: A New Challenge For Society
Rondal, Jean et al (eds.).  London  :   Whurr, 2004
The marked increase in life expectancy in Down syndrome over the last decade, raises many important questions regarding health issues, cognitive involution, and social and professional inclusion of this group. Leading specialists contribute papers. 

Adults with Down Syndrome
Siegfried M. Pueschel  (Ed.). Baltimore MD : Paul Brookes, 2006
Adults with Down syndrome are living longer, fuller lives than ever before.  Discusses the social, clinical, legal and personal issues that people with Down syndrome will have to navigate. Contributions from world experts on medical and mental health issues, post-secondary education, sexuality, recreation and living arrangements.    

AfterLife
Peebles, Allison.  (Director).  Soda Pictures, UK
DVD. Duration: 104 minutes.
A Scottish feature film featured at the Edinburgh Festival in 2004.  Drama about a family that includes an adult with Down syndrome.  Definitely not a documentary, it addresses some difficult issues along with a good and often funny narrative.  Very gritty, very Scottish.  Note that some of the themes could be very confronting to a person with Down syndrome 

Ageing and its Consequences for People with Down's Syndrome:  A Guide for Parents and Carers
Holland, Tony.  Teddington, Middlesex  :  Down's Syndrome Association,  2004
Highly recommended.  Highlights issues that may prove particularly relevant to people with Down syndrome and their carers as they get old.   

Ageing with a Lifelong Disability: a Guide to Practice, Program and Policy Issues for Human Services Professionals
Bigby, Christine.  London  :  Kingsley, 2004
The author uses the concept of  "successful ageing" as a framework in which to consider the issues and practicalities for older people with a lifelong disability. The author currently lectures at La Trobe University Melbourne.

Adults with Down Syndrome: Together, We Can Do It! : A Book for Parents & Adults to Encourage Discussion & Decision Making
Lawrence, P. et al.  Calgary  :  Canadian Down Syndrome Society, 1993
Conference proceedings around issues of vocational and residential options, relationships, marriage and sexuality. 

Ageing In Place: Good Practice Sourcebook
Dew, Angela and Griffin, Tim (eds.).  Sydney  :  Centre for Developmental Disability Studies, 2002
CD-ROM resource for providers of supports to people with disability who are ageing. For carers, families and service providers covering retirement, in-home support, palliative care, community leisure. 

The are "R" word
Dave Hingsburger.  Quebec : Diverse City Press, 2006
"R" is for retarded. This  little book will challenge your thinking.  People  with disabilities have to often cope with negative responses to their disability from the community.  Our response as parents is to offer the advice "Just ignore them".   Hingsburger advocates the opposite approach.  Highly recommended to all parents and carers.

Beautiful (DVD), 2011
Genevieve Clay’s new short film about the development of a relationship that encounters interference. One of the lead actors is Catherine Senior, who has Down syndrome. 

Body & Soul: Diana & Kathy
DVD (Duration: 40 min) N.Y. :Welcome Change Productions. By Alice Elliot. 2007. Documentary about two women who are advocates for the rights of those who are disabled. One of the woman has cerebral palsy and the other has Down Syndrome. They live together and support each other so that they can live independently in the community.

The Caregiving Years
Schultz, C.  and  Schultz. N.   Melbourne  :   Australian Council for Educational Research, 1998
A  carer?  Who?  Me?  Explores issues and problems carers face. A framework is suggested to assist carers in taking appropriate care of themselves as well as of those for whom they provide care.  

Caring for Kathleen: A Sister's Story about Down's Syndrome and Dementia
Fray, Margaret.  Worcestershire, UK  :   BILD Publications, 2000
An unusual insight into the life of an older person with Down syndrome.  Born in 1928, Kathleen was a much loved and valued member of her family. The author cared for her sister after their mother died.  Kathleen developed Alzheimer's disease and died at 70. This book is a celebration of their lives together. 

Catharine with an A
Keir, Edna.  Charnwood, NSW  :  Ginninderra Press, 2003
The author has captured a real feeling of country life in NSW and of her relationship with her adult daughter  Catharine who has Down syndrome.  Catharine's move away from home establishing a measure of independence is reflective of one of the most significant issues families will face and often struggle with. 

Chances and Choices: Making Integration Work
Fullwood, Deborah.   Sydney  :  MacLennan + Petty, 1990
Explores a range of practical strategies and basic factors that promote integration of people with disabilities in schools and communities, where they are welcomed, valued, supported and contribute.  The author sees integration as a process that can be prepared for, managed and maintained.  

Community Living Kit
Centre for Training and Community Development.   Sydney  :  CTCD, 1995
Kit comprising manuals and audio tapes devised by Residential Care Inc.  To assist people with disabilities move into their own home. Topics cover moving into a new home, entertaining at home. 

Community Supports for Aging Adults with Lifelong Disabilities
Janicki, Matthew  and Ansello, Edward (eds.).   Baltimore, MD  :  Brookes, 2000
Looks at options for planning for the life outside of the family home: including financing services, adapting home environments, supporting health, wellness and sound nutrition, coping with end-of-life challenges.

Couples with Intellectual Disabilities Talk about Living and Loving
Schwier, Karin Melberg.  Rockville, MD  :  Woodbine House, 1994
This book will open the hearts and minds of parents and service providers, and help them break down the barriers that keep people with disabilities isolated, lonely, and out-of-touch with their own sexuality 

David and Monica (DVD) 2009
An award winning documentary about two people with Down syndrome who marry. This is the education edition, with extra footage, including clips from experts in relevant fields. We recommend viewing it with interested friends - there is much to discuss.. 

Down syndrome and the consequences of ageing
Video
Holland, Tony.  Down's Syndrome Association, UK, 2003.
An address by authority Professor Tony Holland recorded at the AGM of the Down's Syndrome Association UK. 

Down Syndrome Issues and Information Adult Living Series
Brown, Roy. (Ed.).  Portsmouth, UK : Down Syndrome Educational Trust , 2004
New series covers a wide range of issues affecting the quality of life for adults with Down syndrome.  The DSii Adult Living books are designed for families and professionals.  Each book includes reviews of relevant research, backed up be case studies and practical examples.  The books are written by expert researchers and practitioners from around the world. 
Life for adults with Down syndrome:  an overview
Information communication technology for adults with Down syndrome
Advocacy for adults with Down syndrome
Community and independent living for adults with Down syndrome
Spiritual well-being for adults with Down syndrome
Drama and the arts for adults with Down syndrome:  benefits, options and resources
International and cultural aspects of Down syndrome
Transition to employment
Recreation and adults with Down syndrome
Families of adults with Down syndrome
People with Down syndrome and the law:  an Australian perspective
Inclusive post secondary (tertiary) education for adults with Down syndrome and other developmental disabilities
For information on the series go to www.down-syndrome.org 

The Down syndrome transition handbook: charting your child’s course to adulthood
Simons, Jo Ann, Woodbine House, 2010.
Covers the transition from school to adulthood. Includes post-secondary options, housing options, training & employment, transportation, health care, financial issues.  

Everyday Social Interaction: a Program for People with Disabilities
Riches, Vivienne.  Sydney  :   MacLennan + Petty, 1996      
A social interaction program for people with disabilities.  This book fulfils a long-felt need among professionals and people who have difficulties in developing social and interpersonal skills.

A Good Life: For You and Your Relative with a Disability
Etmanski, Al.   Burnaby,  BC  :  Planned Lifetime Advocacy Network, 2000
Canadian organisation PLAN's step by step approach to securing  a safe and secure future for people with disabilities and their families. Topics include creating a home, building relationships, ensuring choices, developing your will and estate plan. Refer also to The Ties That Bind DVD

A Good Read: Books for Adult New Readers
Cameron, J. (comp.).   Canberra  :  National Library of Australia, 1995
A compilation and  guide to  high interest , low reading level, leisure books. 

Grown man now
Schulz, Jane, in2wit, 2008.
The story of Billy Schulz, a man with Down syndrome born in 1956, written by his mother, Jane, a special education teacher. Her blog is at http://grownmannow.blogspot.com

The guide to good health for teens and adults with Down syndrome
Chicoine, B. & McGuire, D., Woodbine House, 2010.
Excellent book by the authors of Mental Wellness. Looks at all areas of health and what is more common in individuals with Down syndrome. Looks at how to promote healthy lifestyles, dealing with checkups and hospitalisation, issues of ageing and end-of-life concerns.

Holding On, Letting Go:  sex, sexuality and people with learning disabilities
Drury, J.  et al.   London  :   Souvenir Press, 2000
Considers the issues and dilemmas facing the parents and carers of people with learning disabilities particularly the need to balance the protective concern for our children's vulnerability with their rights to be sexual beings. It defines sexuality in terms much wider than sex.

Home at Last: How Two Young Women with Profound Intellectual and Multiple Disabilities Achieved Their Own Home
Fitton, P.,  O'Brien, C.  and  Wilson, J.    London  :  Kingsley, 1995.
The two women who are the subject of this book do not have Down syndrome, but this is an inspiring read, and a useful source of information for parents and other carers thinking about home support schemes.

Improving the Communication of People with Down Syndrome
Miller, J.,  Leddy,  M.  and  Leavitt, L. ( eds.).   Baltimore,  MD  :  Brookes, 1999
An up to date summary of current knowledge and thinking, Includes several chapters on improving speech and language of adults with Down syndrome.

Johnny the Bagger: a true story of customer service
Visionpoint, 2007.
DVD, duration ~10 min.
Short (~10min) video used for managerial training about customer service. Johnny the bagger is a man with Down Syndrome who is inspired and inspiring in his job.

Letting go:  the story of Deb
Broughton, Brian and Broughton, Betty.  Ferntree Gully, Vic : The Broughton Family Trust, 2005
Our reviewer found this book both reassuring and challenging.  It is not a manual with answers.  It is the story of how one young woman and her family prepared for the future. 

Life Planning for Adults with Developmental Disabilities
Greenbaum, Judith PhD, New Harbinger Publications, 2007.
A guide for parents & family members. Learn how to: make decisions about living arrangements; select the right caregivers; work with community service agencies; locate satisfying work and leisure activities; and foster a supportive home environment.

Mental wellness in adults with Down syndrome:  a guide to emotional and behavioural strengths and challenges
McGuire, Dennis, and Chicoine, Brian.  Bethesda MD :  Woodbine House, 2006
Essential reading  for parents and carers of people with Down syndrome.  This groundbreaking new book is written by the founding directors of the Adult Down Syndrome Center of Lutheran General Hospital in Chicago.  This authoritative, easy- to-read guide clarifies what are the common behavioural characteristics of Down syndrome, how to work with them to encourage mental wellness on a day-to-day basis.  Topics include emotional development; self-talk and imaginary friends; communication-related problems; sameness and repetition; anxiety; OCD; depression and other mood disorders.   

Moving On Without Parents: Planning, Transitions and Sources of Support for Middle-aged and Older Adults with Intellectual Disability
Bigby, Christine.   Sydney  :   MacLennan + Petty, 2000
"What will happen when I die?" Examines the nature and success of parental planning for the future care of adult children with intellectual disability. The  "post-parental care" phase which coincides with mid-life and later life, is a relatively new phase in the lives of adults with intellectual disability.  The author lectures at LaTrobe University, Melbourne.

My Budget and Money Plan
Office of the Protective Commissioner, Sydney, NSW, 2003
Booklet on money skills. 

Out And About: The Living Community
Home Farm Trust and Keele University.   Manchester, UK  :  Granada Learning, 1999
CDROM and booklet of life skills activities for the older person with learning difficulties. Has been designed to run with QuickTime 4.  Money section UK biased.

The power to spring up
Katovitch, Diana M., Woodbine House, 2009.
Post-secondary education opportunities for students with significant disabilities. This book is American and so it is aimed at that readership, but it contains useful information about the types of programs that may be available and how students can prepare for education after high school.

Room To Move
Joseph Rowntree Foundation.  Brighton, UK  :  Joseph Rowntree Foundation, 2001
A video and manual resource pack for carers of young people with intellectual  disabilities who are leaving home. For parents and care workers.

Safe and Secure: Six steps to Creating a Good Life for People with Disabilities, Western Australian Edition
Etmanski, Al with Jack Collins & Vickie Cammack, PLAN, 1998
A step by step guide to planning for the future for people with disabilities. Written by PLAN, a Canadian organisation formed by parents to support and advocate for families planning for the future, with input from PIN (Planned Individual Networks Inc.) in Western Australia (a similar organisation to PLAN) to make it relevant to Australian families. Includes chapters on housing, wills and trusts, relationships and future decision making.

Sexuality: your sons and daughters with intellectual disabilities
Schwier,  Karin  Melberg,  and Hingsburger, Dave.   Baltimore, MD  :  Brookes, 2000
If you only ever read one book about intellectual disability, this might just be the one to choose. Not just about sexuality, it addresses the nature and mechanics of relationships, including sexual relationships. People with disabilities are heard throughout:  real people, real relationships, real challenges and real solutions. 

Shorty
Revolution Earth Productions.  Rutherford, NJ :  Revolution Earth Productions, 2003
DVD. Duration: 86 minutes.  Documentary about the life of a 55 year old man with Down syndrome.  

Something About Feelings
Segre, Daniele (Director).  Roma  :  Asociazone Italiana Persone Down,  1999
Video.  Duration: 35 minutes.  Interviews with adults with Down syndrome who discuss feelings, relationships and their  hopes for  future relationships.   In Italian with subtitles. 

The Specials (Season 1) 
DVD, KADA Films, London UK, 2010.
Ten episodes of web series 'The Specials'. Five housemates (some with Down syndrome) aged between 19-23 share a house in Brighton UK. This is their day to day life. Duration: 2 hr. 9 min

Strong Love
DVD, Bonnie Burt, Bonnie Burt Productions, 2007. 
Documentary about Jon Shapiro (a world-class weightlifter) and Holly James (both who have Down syndrome) as they plan their marriage and then live their lives together. Parents, coach and others are interviewed and discuss their changing relationships.

Tall Tales:  self concept and people with learning disabilities
Dave Hingsburger.  Quebec : Diverse City Press, 2005.
3 videodiscs (CDROM). 
This lecture by the extraordinary Dave Hingsburger was recorded in front of a live audience.  Hingsburger's  presentation is full of humour and wisdom, but offers the listener a real challenge.  Feeling good about yourself should be the end goal of all therapy.  A positive approach means more than the giving of reinforcement; it means the giving of respect, of recognition and responsibility.   

Teaching children with Down Syndrome about their bodies, boundaries, and sexuality:  a guide for parents and professionals
Couwenhoven, Terri.  Bethesda MD : Woodbine House, 2007
Essential reading for all parents. The author is a sexuality educator and a parent of a child with Down syndrome. This excellent book encourages parents to be proactive and talk directly and openly to children, teens and young adults about their bodies, personal boundaries, privacy, puberty, sexuality, relationships and abuse prevention.   Each chapter highlights key teaching points, activities and parent statements.  Teaching materials and aids including illustrations of body parts and functions are included. 

The teachings of Jon
Jennifer Owensby (Director). Durham, NC  :  Waking Heart Films, 2006
1 Videodisc (DVD).  Duration:  56 minutes.
This soul-searching and funny documentary about Jon, a 40 year old man who has Down syndrome, ponders the serious questions of how we value each other and what is truly important in life.  Made by Jon's sister and family, the message they impart is that although Jon has an IQ of 20 and does not talk, he has an important purpose; not necessarily to learn, but to teach.   

The ties that bind
John Ritchie (Director).  National film Board of Canada, 2004
DVD Duration:  55 minutes
This excellent DVD by award wining documentary filmmaker Ritchie takes a first hand look at a family's struggle to let go.  They must intentionally build a long-term network of support that may allow their son Chris, who has multiple disabilities, the stability to live on his own. The filmmaker follows the family for three years.  The result is a very intimate film that reveals with humour and emotion, the complexity around one young man's transition toward a more independent life. The support organisation involved is PLAN (Planned Lifetime Advocacy Network), Canada.  

Women with Disabilities Aging Well:  A Global View
Walsh,  Patricia Noonan, and LeRoy, Barbara.  Baltimore, MD   :  Brookes, 2004
Explores the issues of what women with intellectual disabilities experience as they age.  Discusses employment, controlling finances, health and nutrition, relationships with family and friends.  

Working towards independence:  a practical guide to teaching people with learning disabilities
Carr, Janet and Collins, Suzanne.  London, Jessica Kingsley, 1992
The authors describe in non-technical language the application of behavioural psychology to the teaching, care and development of adults with learning disabilities. Examines the skills needed for independent living and going to work, social skills and self control.  Discusses how to help people with particular problem behaviours. 


 

Resources to download free

 DOWN'S SYNDROME ASSOCIATION UK
Ageing and its Consequences for People with Down's Syndrome:  A Guide for Parents and Carers
Holland, Tony.  Teddington, Middlesex  :  Down's Syndrome Association,  2004
Highly recommended.  Highlights issues that may prove particularly relevant to people with Down syndrome and their carers as they get old.
Health - looking after yourself:  for adults with Down syndrome
http://www.downs-syndrome.org.uk

FOUNDATION FOR PEOPLE WITH LEARNING DISABILITIES UK
Meeting the emotional needs of young people with learning disabilities: a booklet for parents and carers
The Menopause and women with learning disabilities
No box to tick:  a booklet for carers on meeting the spiritual and religious needs of people with learning disabilities.
Person-centered approaches and older families
Supporting friendships for older people with learning disabilities You are not alone:  caring for a son or daughter with a learning disability and emotional difficulties
www.learningdisabilities.org.uk