Down Syndrome Information Packet

SUPPORT FOR FAMILIES OF CHILDREN WITH DISABILITIES
A support and resource organization providing services for families of children with disabilities
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1663 Mission Street, 7
Floor • San Francisco, CA 94103 •TEL: 415/920-5040 • FAX: 415/1226 • www.supportforfamilies.org
DOWN SYNDROME INFORMATION PACKET
CONTENTS:
Section 1: Fact Sheets General information on each specific disability
 Down Syndrome, NICHY fact sheet
 Welcoming Babies with Down Syndrome, Down Syndrome Home Page site
 Down Syndrome: Myths and Truths, NDSS website
 Your Baby and Down Syndrome: Answers to Questions You Might Have,
featured on NDSS website
 Down Syndrome, National Organization for Rare Diseases
Section 2: Strategies for Home and School Guides from various
sources about the different approaches in managing each specific
disability
 Clinical Info: Early Intervention and Down Syndrome, NDSS
website
 Questions and Answers About Behavior: An Interview with
Bonnie J. Patterson, MD, NDSS website
 If a Picture Paints 1000 Words, Why Settle for Just One?,
NDSS website
Additional Information
Packets are available.
They include:
ADD/ADHD
Autism/PDD
Behavior
Learning Disabilities
To request an additional
Section 3: How to Work with Professionals Lists and articles about
Packet or for more info
Please contact us at:
the particular service providers associated with each specific disability
 Occupational Therapy and the Child with Down Syndrome,
TEL: 415.920.5040 or
NDSS website
Via e-mail:
 Health Care Guidelines for Individuals with Down Syndrome:
[email protected]
1999 Revision, published in Down Syndrome Quarterly
 Public Awareness Language Guidelines, National Down
Syndrome Congress
 How to Treat People with Down Syndrome: Some Tips for Family Physicians
1993, Down Syndrome Home page site
 Speech and Language Therapy for Children with Down Syndrome, from
Down Syndrome Educational Trust website: http://www.downsyndrome.net/library/periodicals/dsnu/020/02
Section 4: Resources Where to go for further information
 Resources in our Joan Cassel Memorial Library
 Websites
 Evaluation
Disclaimer: Documents included in this packet are not endorsements, but are included for your information
only.
For further information, please contact us at 415.920.5040.
Our office hours are Mon/Wed/Fri, 9:30am-4:30pm and Tues/Thurs, 12:30pm-8:30pm
SUPPORT FOR FAMILIES OF CHILDREN WITH DISABILITIES
A support and resource organization providing services for families of children with disabilities
2601 Mission Street, 3rd Flr • San Francisco, CA 94110 •TEL: 415/920-5040 • FAX: 415/920-5099 • www.supportforfamilies.org
DOWN SYNDROME Information Packet
ACKNOWLEDGEMENTS
We thank these organizations for providing the information & resources contained in this packet.
NICHCY (National Information Center
for Children & Youth with Disabilities
P.O. Box 1492
Washington, DC 20013
(800) 695-0285 - Voice
(202) 884-8441 - Fax
[email protected]
www.nichcy.org
National Institute of Neurological
Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424 - Voice
(301) 468-5981 - TTY
http://www.ninds.nih.gov/
United Cerebral Palsy National
1660 L Street, NW, Suite 700, Washington,
DC 20036
(800) 872-5827 - Phone
(202) 776-0414 - Fax
[email protected]
www.ucp.org
National Organization for Rare Disorders,
Inc.
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
(203) 744-0100 - Voice
(203) 797-9590 - TDD
(203)798-2291- Fax
[email protected]
www.rarediseases.org
Teaching Exceptional Children, a
Publication by The Council for
Exceptional Children (CEC)
1110 North Glebe Road, #300
Arlington, Virginia 22201-5704
(617) 552-3149
www.cec.sped.org/bk/abtec.html
SUPPORT FOR FAMILIES OF CHILDREN WITH DISABILITIES
A support and resource organization providing services for families of children with disabilities
1663 Mission Street, 7th Flr • San Francisco, CA 9410303 •TEL: 415/920-5040 • FAX: 415/282-1226 • www.supportforfamilies.org
Books and Videos in the Support for Families Joan M. Cassel Memorial Library
(To Check out a book/video, you may either drop-in or call Elaine, our librarian at 415-920-5040).
Down Syndrome Books
Babies With Down Syndrome, Woodbine House
Be Good To Eddie Lee, Philomel Books
Choosing Naia, Beacon Press
Communication Skills in Children With Down Syndrome, Woodbine House
Count Us In, Harvest Books
Differences in Common, Woodbine House
Down Is Up for Aaron Eagle, HarperCollins
Medical & Surgical Care for Children With Down Syndrome, Woodbine House
Moose, Brookline Books
A Parent's Guide to Down Syndrome, Brookes Publishing Company
DOWN SYNDROME PACKET EVALUATION
We'd like to ask you how this packet has made a difference to you. Please tell us how strongly agree or disagree with each statement and if you have
any comments you would like to share.
A"1" means....
1= disagree strongly 2= disagree somewhat 3= neither agree or disagree 4= agree somewhat 5= agree strongly N/A= not applicable
Resource
Packet
This packet
assisted me to
better understand
my child's special
needs or
disability
1 2 3 4 5 N/A
This packet
assisted me to
become more
knowledgeable
about options,
programs,
services or
resources
1 2 3 4 5 N/A
This packet
assisted me to
feel better
prepared (or
more confident)
to advocate for
my child, my
family, or myself
1 2 3 4 5 N/A
This packet
assisted me to
feel better
prepared (or
more confident)
in my ability to
work with
professionals
1 2 3 4 5 N/A
This packet
assisted me to
feel less
isolated, less
stressed, and/or
better prepared
to solve
problems
1 2 3 4 5 N/A
This packet
assisted me be to
more effective or
more involved in
my child's
education.
1 2 3 4 5 N/A
Comments:
How easy was it to read ? [on a scale of 1 to 5, 5 being besf\: 12 3 4 5
Which articles were most helpful?
Any other items yoi i would like to see?
10. Overall, how helpful was info you received? __ very helpful __moderately helpful ___ slightly helpful ___ not helpful
11. Has the info you received enabled you to obtain at least some of the services you feel your child needs? □ YES
Please explain:
□ NO
□ not applicable
12. Do you fee! you could have received the assistance you needed if Support for Families /Open Gate had not been available?
□ YES
□ NO
□ not applicable
13. Did the information, education, or support you received make it more likely that special education issues can be resolved without having to go to a
Fair Hearing?
□ YES
□ NO
□ not applicable
If not, why not?
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Please mail or fax evaluation to: Support for Families of Children with Disabilities, 1663 Mission Street, 7 Floor,
San Francisco, CA94103 or fax: 415.282.1226