Friday, 2 May 2014

Book 3. Disability in the Family

The “People Power” Disability-Serious Illness-Senior Citizen Superbook

Book 3. Disability in the Family

(Parents & Children)

Table of Contents

Disabilities Introduction

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

Disabilities Introduction

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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