Book 3. Disability in the Family
(Parents & Children)
Table of Contents
Volume 1. Disabled Children With Intellectual or Physical Challenges
Chapter 1. Children's Disabilities Basics
Raising Disabled Children/ Parents of Disabled Children
The Marriage After Having a Disabled Child
Children & Serious Illness Websites
Disabled Parents/ Parents With Challenges
Chapter 2. Disabled Children Organizations
Children's Disability Websites
Major Children's Disability Organizations
Children's Disability Organizations
Youth Disability/ Teen Disabled Websites
British Children's Disability Websites
Chapter 3. Disabled Children Help by State
State Directors of Children with Special Health Needs
Children's Special Needs Health Care by State/ Disabled Children Medical Services by State
Children's Special Health Care Needs by State
Chapter 4. Disabled Child Respite Care
Respite Care Info for Children & Adults
Respite Websites/ Respite Coalition Websites
Respite Care For Disabled Children
British Respite Care for Disabled Children
Chapter 5. Disabled Child Topics
Healthcare Transition from Childhood to Adulthood
Headstart Program Info
Adult Disabled Children Info
Free Organizers for Medical Paperwork
A Medicaid Waiver so You Qualify for Medicaid & Your Disabled Child Gets Services
Chapter 6. Children's Special Needs Summer Camps
Special Needs Summer Camps Info
Lists of Special Needs Summer Camps
Children's Disability Summer Camps
Choose a Summer Camp Websites
Summer Camp List Websites
Chapter 7. Teach People With Challenges
Physically-Challenged Teacher/ Physically-Challenged Social Worker
Blind Education/ Teachers of the Blind
Deaf Students Education/ Teach Deaf/ Hard-of-Hearing Students
Volume 2. Parent of a Disabled Child/ Raising a Disabled Child
Chapter 1. Parents of Special Needs Children
No Matter What, Be Caring, Loving & Compassionate
A Stressed-Out Parent is Bad for Everyone
In the End: The Final Result of Being the Parent of a Disabled Child
Chapter 2. Practical Day-to-Day Life
Daily Reality: Finances, Housekeeping, Caregiving, etc.
Housekeeping Websites/ Housework Websites
Time Management for Parenting a Disabled Child
Time Management Websites
Chapter 3. The Parent of a Disabled Child
Special Needs Child Parenting
Raising Disabled Children Websites/ Parents of Disabled Children Websites
The Marital Relationship With a Disabled Child
Healthy Love Insights
Dealing With Relatives & Friends
Single Parent of a Special Needs Child Dating
Chapter 4. Parent Help by State
Parent Training and Information Centers, PTIs by State
State Parent Training and Information Centers
Parent-to-Parent by State
Parent-Partnership Disability Organizations by State
Chapter 5. Childcare For a Disabled Child
Disabled Children at Daycare
Can't Find Disabled Daycare
Some Alternative Childcare Ideas
Childcare Resources
British Childcare Resources
Canadian Childcare Resources
State Childcare/ Daycare Licensing Offices
Provincial Daycare Offices Canada
Chapter 6. Different Levels of Independence
Where Will the Child End Up?
Adult Disabled Children
Financial & Legal Paperwork
Letter of Intent Info
Special Needs Trust Info
Living Trust Websites
Guardianship by Law/ Legal Guardianship
Power of Attorney Info
Chapter 7. A Working Parent With a Disabled Child
Work & Raising a Disabled Child
Work & Raising a Disabled Child Websites
Family & Medical Leave Act/ FMLA
Chapter 8. Parents of Disabled Children Support Groups
Parental Groups of Disabled Children
Parental Groups of Disabled Children
Online Support Groups for Parents of Disabled Children
Everybody has disabled people somewhere in their family tree. Lots of people are born disabled due to genetic reasons or as the result of pregnancy complications. People get injured or acquire debilitating diseases at some point in life. I've lived with both, a disabled relative and serious injuries of my own.
The thing is that the world goes on. It doesn't slow down or stop just because someone is disabled. We can do so much politically and the rest we have to do on our own to fit into the world somehow in a useful, productive way to get the money we want to buy the things that will help us survive and enjoy our lives more.
The best thing I ever saw about disabilities was the 1940s movie called Shaggy Bush which was a movie about a family going through ups and downs. There was a bit in there where the mother said her daughter's disability didn't mean she was doomed. It just meant that she would still do what she felt in her spirit with her life with this extra nuisance to deal with.
There's a lot of discrimination. You can't legislate it away. The only way to solve it is to prove to prejudiced people that you can do the things you do as a job or for a career just as well or better than other people.
As a group, disabled people are the poorest category within society. The government could do more but it won't happen until disabled people of all kinds come together to form a powerful voting block capable of swaying elections like the AARP for people over 50.
There has to be some kind of major aggressive program to train disabled people and put them out into the workforce. They should get preferential treatment for all government jobs.
There are all kinds of assisted living retirement communities for seniors who can afford them. There could be living communities built especially for disabled people. We're wealthy enough as a society to do this but we choose to spend the money on warfare and all kinds of other foolishness like border guards between Canada and the United States. We're spozed to be best friends.
I hope this book will help you but there are a lot of holes in it. It's a first edition. It has lots of room for improvement. To all the disabled and seriously ill people out there, this is your book. Send me articles, websites, tips, etc. to help make it the one central disabilities help book in the world.
Volume 1. Disabled Children With Intellectual or Physical Challenges
Chapter 1. Children's Disabilities Basics
Raising Disabled Children/ Parents of Disabled Children
Parents have to work out a balance of the afflicted child with the other children in the family and also keep medical records while watching the finances.
Many of the mainstream groups like boy scouts, girl guides, YMCA, etc. make an attempt to include disabled children into their membership roster.
All the research on disabled children indicates that they want to be treated like normal children in all respects except for the treatment of the nuisance called the disability.
Don't treat the child as a broken down poor soul doomed to a sad life, treat him as a highly dignified competent child who just happens to have a disability which is just a little nuisance to the pursuit of his life.
If you have private medical insurance, it could cover some costs of the things your disabled child needs.
php.com, parents helping parents; a resource guide for parents with children who have special needs.
The Marriage After Having a Disabled Child
A lot of marriages fall apart after the birth of a disabled child. It's kind of like each feels the other has let them down.
People feel guilt and shame for having a disabled child.
They get depressed. They grieve.
They fear the future.
You either adjust and work as a team or break up.
Raising a disabled child is hard. You have to educate yourself so that you get external support to help you.
You have to keep the marital relationship going while raising your child. You need romance. There have to be two lives:
1.) Raising the child
2.) The marital relationship
Self-pity doesn't help anyone. Taking care of yourself does. It's not fair to you to keep thinking about how God shortchanged you with a disabled child. Just do the best you can and get on with it rather than dwelling on your bad luck.
You have to pace yourself. Give some love and attention to the child and some to your spouse.
You either adjust or live in turmoil.
You don't know the good things that could possibly happen. I saw a disabled guy on TV who had no legs so he was crawling around the world on his hands to raise money for disability research. A disabled child can still grow up to do great, noble things.
If the disability is moderate, the child's spirit could defeat it. If you teach the child to love his life then the disability becomes a minor nuisance. I'm half-blind but when I lost sight in one eye, I tried to ignore it and it worked.
You have to relax and not let the caregiver lifestyle wear you out.
You have to know where government and charitable help is (as in disability organizations) and ask for it. Get friends and relatives to help too.
Talk as a couple about your feelings.
Each of you take on a role you're comfortable with in raising the child and being together as a couple.
Try to resolve ideological differences you have about how to raise the child. Many men want to give tough love while the woman wants to protect the child from the outside world.
If you divorce, you can find a more suitable mate willing to love the child.
If you want relationship knowledge, get my sex book or go to #306.7, #613.96 and #646.76 at the library.
Children & Serious Illness Websites
aacap.org/cs/root/facts_for_families/the_child_with_a_longterm_illness
amazon.com/when-someone-very-serious-illness/dp/0962050245
coordinatedcare.net/hcc.html, helping children cope with serious illness fund.
growthhouse.org/childgrv.html, helping children with grief
kidsfirst.org/addenda/2008/05/helping-children-cope-with-serious.html
thechildrenshospital.net/news/publications/shine/spring-2009/serious-illness.aspx
sesameworkshop.org
thewebbuy.com/when-someone-has-a-very-serious-illness-children-can-learn-to-cope-with-loss-and-change/0962050245/thwebu-20.html
muppetnewsflash.com/2008/05/sesame-street-helps-children-cope-with.html
kidshealth.org
vet.ohio-state.edu/assets/pdf/hospital/companionanimals/honoringthebond/helpingchildrencopefactsheet.pdf, helping children cope with the serious illness or death of a companion animal.
weirdtechnewshub.blogspot.com/2006/11/online-games-help-sick-kids-to-cope.html, online games help sick kids to cope with their illnesses.
dentalplans.com/articles/4654/, help children cope children ages 3 to 18 who are coping with the serious illness or death of a loved one from cancer
Disabled Parents/ Parents With Challenges
Anybody is free to have children, regardless of whether they're physically or mentally disabled. Some physically disabled women have a hard time with pregnancy.
Parent to Parent is a group of parents that help disabled parents. They have chapters in almost every state.
disabledparents.net
disabledparentsnetwork.org.uk
putzworld.blogspot.com, a deaf mom
adopt.org/assembled/disabled_parents.html
adopting.adoption.com/child/disabled-persons-can-adopt.html, disabled persons can adopt.
amazon.com/disabled-parents-dispelling-national-childbirth/dp/1857752570, book called disabled parents: dispelling the myths by michele wates.
channel4.com/health/microsites/f/family/parenting/disabled.html
direct.gov.uk/en/disabledpeople/disabledparents, information and advice for disabled parents.
disabledparentconnection.org, they help the children of disabled parents.
disabledparents.net
disabledparentsnetwork.org.uk
dppi.org.uk, disability, pregnancy & parenthood international.
facebook.com/group.php, disabled parents network.
familyandparenting.org/disabledparents/
independent.co.uk/life-style/health-and-wellbeing/features/mothers-little-helper-to-grow-up-caring-for-a-disabled-parent-can-be- a-joy-761595.html
jrf.org.uk/knowledge/findings/socialcare/n34.asp, supporting disabled adults as parents.
lookingglass.org, 800 644 2666
lydc.org, parents supporting parents of children with disabilities.
myspace.com, type in disabled parents.
myspace.com/disabled_parent
ncsl.org/statefed/welfare/parent.pdf
ourworld.compuserve.com/homepages/trishandjohn/disabilitycool
partoparvt.org, parent to parent of vermont.
spannj.org, statewide parent advocacy network of new jersey.
trfn.clpgh.org/star
Chapter 2. Disabled Children Organizations
Children's Disability Websites
Try #362.4 at the library for books about children's disability organizations, #371.9, #646.78, #649.1511, HQ759, HV1596, LC3981 and RJ506 for books about raising disabled children.
Use this formula to find state agencies, disability and parent organizations:
nichcy.org/stateshe/**.htm
nichcy.org/stateshe/al.htm
nichcy.org/stateshe/tx.htm
sert.org, special equestrian riding, ride horses.
carersblog.wordpress.com
en.wikipedia.org/wiki/disabled_children's_computer_group
med.umich.edu/1libr/yourchild/specneed.htm
pathwaysawareness.org, pathways awareness foundation a not-for-profit organization dedicated to education for and about children with movement and physical challenges, and their families.
fcsn.org, federation for children with special needs
children-special-needs.org/parent.html, vision checklist for parents, teachers and friends
communityinclusion.org medicalhomeinfo.org, the national center of medical home initiatives for children with special needs, featuring a comprehensive a-z listing of health topics, resources available by state, tools, and resources.
nichcy.org/pages/home.aspx, the national dissemination center for children with disabilities, publications, resources, advocacy, facts and more about children's disabilities.
211.ca, helpline, 2-1-1 in canada.
airs.org, alliance of information and referral systems, national organization of local, regional, and state information and service providers.
211.org, telephone number that, where available, connects people with important community services and volunteer opportunities.
ability.com
ablelink.org
ablelink.org/public/default.htm, putting children and adolescents with specialized needs in touch with the world.
adapt-ability.com
ahherald.com/disabilities
dms.dartmouth.edu/koop/resources/chronic_illness, chronic illness resources for teens
4girls.gov/disability
fvkasa.org, youth with special health care needs speaking on behalf of themselves.
cdc.gov/ncbddd/kids, resources for children from 4th grade through high school, explore information about disabilities and health for kids.
ldonline.org/kidzone/kidzone.html, this is a site for children with learning disabilities that includes stories, articles and artwork from different kids and teens.
pages.prodigy.net/mattgreen, a place to share information for teens with crohn's disease, colitis, or ibs.
wowusa.com, wow empowers kids in wheelchairs by encouraging personal achievement through creative learning and expanded life experiences that lead to independent living skills.
airs.org/affiliates/aff_affiliateguide.asp, click here to view state airs affiliates..
bearabletimes.org, opens doors of communication and build bridges to connect children through education, health and technology resources.
beaverrun.org, pennsylvania camp for disabled kids.
bravekids.org
buildhouse.org, berkeley youth living with disabilities.
census.gov/hhes/www/disability/disability.html, disability statistics.
childrenshospitals.net
childrenscharities.org, children's charities of america.
childrensdefense.org, 800-cdf-1200
childrensdisabilities.info
childrensdisabilities.info
children-special-needs.org
childrenwithdiabetes.com
chmc.org/departmt/sibsupp, sibling support project.
comeunity.com/disability
ddrcco.com/states.htm, developmental disabilities.
dftoys.com
dftoys.com, 800-308-2208, toys for disabled kids.
disabilityresource.com
disabilityresources.org
drakemusicproject.org, enabling disabled children and adults to play conventional musical instruments.
dreamms.org
en.wikipedia.org/wiki/carers_and_disabled_children_act_2000
en.wikipedia.org/wiki/disabled_children's_computer_group
enablingdevices.com, 800-832-8697
eparent.com
equifriends.org, for disabled people.
familyvillage.wisc.edu
familyvillage.wisc.edu/comm/index.html, family village state resources
familyvoices.org, 888-835-5669, children with special healthcare needs.
familyvoices.org, family voices. is a national, grassroots clearinghouse for information and education concerning the health care of children with special health needs.
flametree.co.uk
funrsc.fairfield.edu/~jfleitas
getkidsgoing.com, helping to get disabled children into sport.
hometown.aol.com/lenore1231/myhomepage/index.html, children with congenital heart defects.
indie.ca/neads/moreneads
informcanada.ca, inform, national information and referral organization
ilru.org/html/publications/directory/index.html, centers for independent living.
irsc.org, special children.
kapablekids.com, 800-356-1564, learning materials.
kaplanco.com, 800-334-2014, products for disabled kids.
kayeproducts.com, products for kids.
ldanatl.org, learning disabilities.
ldonline.org/finding_help/local_org/locorg-help.html, ld online, click on your state's name to find the local chapters of helpful organizations and other available resources for learning disabilities
lehman.cuny.edu/faculty/jfleitas/bandaides, growing up with medical problems.
lookingglass.org
medem.com
modimes.org, march of dimes.
nami.org, 800-950-6264, national alliance for the mentally ill.
naric.com, 800-346-2742, rehabilitation information center.
nathhan.com, homeschooling special needs children.
ndmda.org, 800-826-3632, manic-depressive assn.
nichcy.org, 800-695-0285, children and youth with disabilities.
nichcy.org/states.htm#statelist, nichcy, learn about resources and service providers in your state through nichcy
nimh.nih.gov, 800-421-4211, institute of mental health.
nmha.org, 800-969-6642, mental health assn.
npnd.org, national parent network on disabilities.
nppis.org, 800-651-1151, parent to parent support and information system.
pacer.org, children.
pacifier.com/~mstephe, infantile refsum's disease.
parenttoparentnys.org, 800-305-8817
pfot.com, 800-pfot-124, therapy products and toys for developing motor skills.
php.com, parents helping parents.
rda.org.hk, riding for the disabled association of hong kong, horse riding.
reallifestories.com, stories focusing on real-life disabilities, diseases, and problems from a child's perspective.
sammonspreston.com, 800-323-5547, 800-665-9200, canada, products for kids.
schoolnet.ca/sne
sibs.org.uk, for brothers and sisters of disabled children and adults, a uk charity.
snow.utoronto.ca
specialneedsfamilyfun.com
specialolympics.org
starbright.org
tmoon.com/ks/ks,htm, klinefeleter's syndrome, xxy chromosome abnormaility.
ucando.org/kids.html, kids who focus on what they can do instead of what they can't.
uncnews.unc.edu/news/health-and-medicine/unc-study-chilling-hardship-rates-among-families-raising-disabled-children.html, raising disabled children is expensive.
usdoj.gov/crt/ada, ada.gov, americans with disabilities act.
vacterconnection.org, vacterl association, congenital disease.
vsarts.org/programs.html, very special arts, the international organization which offers art classes to disabled and non-disabled children and adults.
Major Children's Disability Organizations
Try #362.4 at the library for books about children's disability organizations, #649.1511, HV1596 and RJ506 for books about raising disabled children.
National Information Center for
Children & Youth With Disabilities
Pob 1492
Washington, Dc 20013
800-999-5599
800-695-0285
800-695-0285, Tdd.
202-884-8200
Fax: 202-884-8441
nichcy@aed.org
nichcy.org
National Parent Network
On Disabilities
1130 17th St. Nw
#400
Washington, Dc 20036
202-463-2299
npnd@cs.com
npnd.org
National Dissemination Center
for Children with Disabilities (NDCCD)
Pob 1492
Washington, DC 20013
(800) 695-0285
nichcy@aed.org
nichcy.org
The Arc of the United States
1010 Wayne Ave
#650
Silver Spring, MD 20910
301-565-3842
thearc.org
Information, support and advocacy for people with developmental
disabilities.
Easter Seals Disability Services
230 West Monroe Street
#1800
Chicago, IL 60606
312-726-6200
800-221-6827
easterseals.com
450 centers across the country offer a variety of services to help people with disabilities.
Family Voices, Inc.
2340 Alamo SE
#102
Albuquerque, NM 87106
505-872-4774
888-835-5669
familyvoices.org
Information and workplace information for families of children with special health care needs.
National Alliance for the Mentally Ill NAMI
2107 Wilson Boulevard,
#300
Arlington, VA 22201-3042
703-524-7600
nami.org
Offers "Special Needs Estate Planning Guidance System."
Parents Advocacy Coalition for Educational Rights (PACER)
8161 Normandale Blvd.
Minneapolis, MN 55437
(952) 838-9000
pacer@pacer.org
pacer.org
For children with disabilities.
US Department of Justice
950 Pennsylvania Ave
NW
Civil Rights Division
Disability Rights Section
Washington, DC 20530
800-514-0301
ada.gov
Free publication Commonly Asked Questions About Child Care Centers and the Americans with
Disabilities Act.
National Technical Assistance Alliance for Parent Centers
PACER Center
8161 Normandale Boulevard Minneapolis, MN 55437-1044
952-838-9000
888-248-0822
taalliance.org
100+ Parent Training and Information Centers PTIs and Community Parent Resource Centers
Organization of Protection and Advocacy
P&A Systems and Client Assistance Programs CAP
National Disability Rights Network
900 Second Street NE,
#211
Washington, DC 20002
202-408-9514
napas.org
Provides federally-mandated legal representation and advocacy services to those with disabilities.
Children's Disability Organizations
Try #362.4 at the library for books about children's disability organizations, #649.1511, HV1596 and RJ506 for books about raising disabled children.
Advocates for Children
151 W. 30th Street
-5th Floor
Nyc 10001
212-947-9779
Fax: 212-947-9790
info@advocatesforchildren.org
advocatesforchildren.org
At&T National
Special Needs Center
800-468-4789
ssgroup.com
Information on products.
Autism Research Institute
4182 Adams Avenue
San Diego, CA 92116
(619) 281-7165,
autismresearchinstitute.com
The Family Village Waisman Center University of Wisconsin-Madison
1500 Highland Ave.
Madison, WI 53705-2280 familyvillage.wisc.edu
Resources to help parents and religious institutions integrate those with disabilities.
Parents Without Partners, Inc.
1650 South Dixie Highway,
#510
Boca Raton, FL 33432
561-391-8833
parentswithoutpartners.org
Education, support and social activities family and adult for single parents.
Sibling Support Project of the Arc of the United States
6512 23rd Ave NW
#213
Seattle WA 98117
206-297-6368
thearc.org/siblingsupport
Information and training to start a sibling support group.
Batten Disease Support and Research Association
2600 Parsons Avenue
Columbus, Oh 43207
800-448-4570
bdsra.org
Center for Children With
Chronic Illness & Disability
Box 721
420 Delaware St.
Minneapolis, Mn 55455
612-626-4032
Fax: 612-626-2134
Chicago Center for Family Health
445 E. Illinois
#651
Chicago, Il 60611
312-321-6040
ccfu@uchicago.edu
uchicago.edu
Clearbrook
2800 Central Road
Rolling Meadows, Il 60008
847-870-7711
Nonprofit group helps people with developmental disabilities.
Council for Disability Rights
205 W. Randolph
#1650
Chicago, Il 60606-1820
312-444-9484
312-444-1967 Tty
cdrights@interaccess.com
disabilityrights.org
Developmental Delay Resources
4401 East West Highway
#207
Bethesda, MD 20814
(301) 652-2263,
devdelay.org
Disabled Children's Relief Fund
402 Pennsylvania Ave.
Freeport, Ny 11520
516-377-1605
Fax: 516-377-3978
Helps poor, disabled kids.
Dolphin Research Center
Pob 522875
Marathon Shore, Fl 33052-2875
305-289-1121, Ext 232, Special Needs Program.
dolphins.org
Children and adults can play with the dolphins.
Dysautonomia Foundation
633 3rd Avenue
12th Floor
NYC 10017
212-949-6644
familialdysautonomia.org
Dream Factory
315 Guthrie Green
Louisville, Ky 40202
800-456-7556
502-584-3928
Grants dreams to disabled people.
Enabling Devices and Toys for Special Children
385 Warburton Avenue
Hastings-On-Hudson, Ny 10706
800-832-8697
914-478-0960
enablingdevices.com
Eric Clearinghouse On
Disabilities & Gifted Education
Council for Exceptional Children
1920 Assn. Dr.
Reston, Va 20191-1589
800-328-0272, Voice and Tty
703-264-9449, Tty
ericec@cec.sped.org
ericec.org
cec.sped.org
Exceptional Parent Magazine
555 Kinder Kamack Rd.
Oradell, Nj 07649-1517
800-372-7368
eparent.com
Family Resource Center On Disabilities
20 E. Jackson Boulevard
#300
Chicago, Il 60604
800-952-4199
312-939-3513
ameritech.net/users/frcdptiil/index.html
Special education law assistance.
Feldenkrais
336 Bon Air Center
#384
Greenbrae, Ca 94904
800-386-1441
415-464-0777
Fax: 415-464-0779
feldenkrais-intl.com
Holistic treatment.
Gesell Institute of Human Development
310 Prospect Street
New Haven, Ct 06511
203-777-3481
gesell.inst@worldnet.att.net
Workshops to recognize developmental maturity in children.
Health Care Services for Children With Special Needs
1025 Connecticut Avenue, Nw
#1100
Washington, Dc
202-466-8483
hscsn.org
Human Services Research Institute
2336 Massachusetts Avenue
Cambridge, Ma 02140
617-876-0426
Fax: 617-492-7401
hsri.org
Indiana Resource Center for Families With Special Needs/ Insource
809 North Michigan Street
South Bend, In 46601
800-332-4433
219-234-7101
insource.org
Institute for Therapy Through The Arts
6160 N. Cicero Avenue
Chicago, Il 60646
773-685-3911
musicinst.com
Art/ music therapy.
Kennedy Krieger Institute
707 N. Broadway
Baltimore, Md 21205
410-502-9400
410-502-9000
888-554-2080
Fax: 410-502-8471
410-502-9806, TTY
kennedykrieger.org
Medical and educational resource.
Kesbet-Jewish Parents of Children With Special Needs
3210 W. Dundee Road
Northbrook, Il 60062
847-205-0274
keshet.org
Life Planning Services
Future Planning for Persons With Disabilities
12406 N. 32nd Street
#102
Phoenix, Az 85032
602-404-4239
888-447-2525
Fax: 602-996-0944
lifeplanningservices.com
Mothers United for Moral Support
150 Custer Ct.
Green Bay, Wi 54301
414-336-5333
Support group for mothers of children with disabilities and those very ill.
National Assn. of Developmental Disabilities Councils
1234 Massachusetts Ave. Nw
#103
Washington, Dc 20005
202-347-1234
National Center for Education in Maternal and Child Health
Ncemch
2000 15th Street, North
#701
Arlington, Va 22201-2617
703-524-7802
ncemch.org
National Center for Youth With Disabilities
U. of Minnesota
420 Delaware St. Se
Box 721
Minneapolis, Mn 55455-0392
800-333-6293
umn.edu
Free resource library service.
National Father's Network
Kindering Center
16120 Ne 8th Street
Bellevue, Wa 98008-3937
425-747-4004, Ext. 218
Fax: 425-747-1069
fathersnetwork.org
National Foundation of Ectodermal Dysplasias
410 E. Main
Pob 114
Mascoutah, Il 62258-0114
618-566-2020
nfed.org
National Information Center for Children and Youth with Disabilities
Pob 1492
Washington, DC 20013-1492
800-695-0285
nichcy.org
National Legal Center for The Medically Dependent S
7 South 6th Street
#208
Terra Haute, In 47807
812-238-0769
Legal council for end of life issues.
National Maternal & Child Health Clearinghouse
2070 Chain Bridge Rd.
#450
Vienna, Va 22182-2536
703-821-8955
Fax: 703-821-2098
os.dhhs.gov/hrsa/mchb
circsol.com/mch
They will answer questions such as developmental disabilities in babies.
National Clearinghouse On Women
& Girls With Disabilities
Educational Equity Concepts, Inc.
114 E. 32nd St.
Nyc 10016
onisland.com/eec
National Information Clearinghouse On Children Who Are Deaf-Blind
Teaching Research
Northwestern Oregon State College
345 N. Monmouth Ave.
Monmouth, OR 97361
800-438-9376
800-854-7013, Tty
503-838-8756
tr.wou.edu/dblink
National Information Clearinghouse for
Infants With Disabilities & Life Threatening Conditions
Center for Developmental Disabilities
U. of South Carolina
Benson Bldg.
Columbia, Sc 29208
800-922-9234
800-922-1107
sc.edu
National Parent Network
On Disabilities
1600 Prince St.
#115
Alexandria, Va 22314
703-684-6763
National Rehabilitation Information Center/ Naric
1010 Wayne Avenue
Silver Spring, Md 20910-5633
800-346-2742
naric.com
National Youth
Crisis Hotline
800-448-4663
800-448-1833, Tdd
Parents Let's Unite for Kids
516 N. 32nd Street
Billings, Mt 59101
800-222-7585 Montana
406-255-0540
Fax: 406-255-0523
pluk.org
parenttoparentnys.org
800-305-8817
Support group for parents of children with disabilities.
Pathways Awareness Foundation
123 N. Wacker Drive
Chicago, Il 60606
800-955-2445
friends@pathwaysawareness.org
pathwaysawareness.org
Rehabilitation Institute of Chicago
345 E. Superior
Chicago, Il 60611
312-238-1000
rehabchicago.org
Sibling Support Project
Children's Hospital
Pob 5371/Cl-09
Seattle, Wa 98105-037 1
206-527-5712
seattlechildrens.org/sibsupp
Special Olympics International
1325 G Street, Nw
#500
Washington, Dc 20005-3104
202-628-3630
specialolympics.org
Special Recreation, Inc.
362 Koser Ave.
Iowa City, Ia 52246-3038
319-337-7578
Compendium of Special Recreation for People with Disabilities, book listing 1500+ recreation organizations for people with disabilities.
Shriners Hospital for Crippled Children
2900 Rocky Pt. Dr.
Tampa, Fl 33607
800-237-5055
813-281-0300
Fax: 813-281-8146
shriners.org
Wheelchair Sports Usa
3595 E. Fountain Boulevard
#L1
Colorado Springs, Co 80910
719-574-1150
wsusa@aol.com
wsusa.org
Williams Syndrome Association
Pob 297
Clawson, Mi 48017
248-541-3630
Fax: 248-541-3631
wsaoffice@aol.com
williams-syndrome.org
Youth Disability/ Teen Disabled Websites
advocatesforyouth.org
afroarticles.com/article-dashboard/article/online-safety-and-teens-with-intellectual-disabilities
articlesbase.com/disabilities-articles/internet-and-youth-with-intellectual-disabilities-56039
cecp.air.org/juvenilejustice/docs/youthwithdisabilities.pdf
cjonline.com/stories/100306/tee_disabilities.shtml
couragecenter.org/contentpages/youthsessions1.aspx
crchealth.com/troubled-teenagers/developmental-disabilities/
crchealth.com/troubled-teenagers/learning-disabilities-schools/
cshcn.org/childcare-schools-community/employment-resources-youth-disability
cyh.com
disabilitiesnews.org
disability.about.com/od/childrenwithdisabilities/u/children-and-teens.htm
disability.about.com/od/disabilityadvocatesandsupport/tp/youth-disability-advocate-awards
disability.gov, youth programs
disabilitypride.org
disabled-world.com
education.com/reference/article/teens-special-needs-disabilities-info/
ehow.com/about_5558640_group-homes-disabled-teens.html
ehow.com/list_6873013_activities-disabled-youth.html
empowermentzone.com
facebook.com/pages/sped-child-teen-disability-events
facebook.com/youthwithdisabilitiesrock
family.samhsa.gov/talk/teendisability.aspx
fem-blog.tumblr.com/post/28835371765/sex-education-for-youth-w-disability
findyouthinfo.gov
fvkasa.org, kids as self advocates is a national, grassroots project created by youth with disabilities for youth who learn to model leadership and the power of self-advocacy.
jewishfamilyservice.org/resources/files/resourcebookforythwithdisabilities.pdf
layouth.com/i-can-do-anything/
learningdisabilities.about.com/od/parentingldteens/tp/ldfactsforteens.htm
lifefaithdisability.com/tag/youth/
med.umich.edu/yourchild/topics/disabsex.htm
momtalk.com
momtalk.com, teens with disabilities:
mysummercamps.com/camps/special_needs_camps/physical_disabilities/
nationalyouth.com/learningdisabilities.html
ncd.gov
ncwd-youth.info
nichcy.org
nichcy.org/disability
nyln.org, national youth leadership network (nyln). is a youth driven and youth led non-profit leadership capacity-building organization of youth living with various disabilities.
ourkids.net/disability-camps.php
pamf.org/teen/health/diseases/disabilities.html
parentingkidswithdisabilities.blogspot.com
parentingteens.com/category/learning-disability/
sarahnewton.com/how-to-help-with-your-teenagers-learning-disability/
serviceandinclusion.org
slideshare.net/nrcpara/transition-needs-of-older-youth-with-disabilities
special-needs.adoption.com/children/travel-training-for-youth-with-disabilities.html
ssa.gov/kids/
summercamps.com/special_needs_camps/learning_disabilities/
teenageproblems.net
teenhelp.com/learning-disability/
teens.webmd.com
troubledteens.net
troubledteensearch.com/teens-with-disabilities.html
yfainc.org
yodisabledproud.org/resources/more-resources.php
youthgroupgames.co.uk/youth-group-games-for-disabled-children.html
youthlink.ca/support/intellectual_disability
youthreadychicago.org/employers/youth_with_disabilities.html
youthspecialties.com/articles/a-parents-perspective-ministry-to-teenagers-with-disabilities/
British Children's Disability Websites
cafamily.org.uk, contact a family, for families with disabled children.
whizz-kidz.org.uk, children's charity helping disabled children throughout the uk.
sharedcarenetwork.org.uk, carers of disabled children, respite care.
audit-commission.gov.uk/disabledchildren/parentfactsheet.asp, services for disabled children
edcm.org.uk, every disabled child matters.
dppi.org.uk, disability, pregnancy & parenthood international.
Chapter 3. Disabled Children Help by State
State Directors of Children with Special Health Needs
State Directors of Children with Special Health Needs help with innovative managed care arrangements, Medicaid managed care, policies, access to care, epidemiology of chronic childhood conditions and the identification of children with special health care needs.
ed.gov/programs/erod/org_list.cfm, a list of state agencies that help children with special health care needs.
Alabama
Children with Special Health Needs (Alabama)
State Department of Rehabilitation Services
602 South Lawrence Street
Montgomery, AL 36104
(334) 293-7500
Toll-Free: (800) 441-7607
Toll-Free Restrictions: AL residents only
Fax: (334) 613-3553
TTY: (334) 293-7383
crs@rehab.alabama.gov
rehab.alabama.gov/
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