Child Care Resource and Referral

Provides information and referral services for families seeking child care including inclusive care for children with special needs.
Phone: 800-299-1627
web site: http://www.iaccrr.org

 

Family Helpline

A statewide information and referral service that promotes Maternal and Child Health, WIC and Children with Special Health Care Needs programs.
Phone: 800-433-0746
web site: http://www.in.gov/isdh/programs/mch/ifh.htm

 

Family Voices - Indiana

Partnering with professionals and families to advocate for health care services that are family-centered, community-based, comprehensive, coordinated and culturally competent.
web site: http://www.familyvoices.org/st/IN.htm

 

First Steps

Indiana’s early intervention system for children, birth-3, and their families.
Phone: 800-441-STEP
web site: http://www.state.in.us/fssa/first_step/

 

Indiana Childrens' Special Health Care Services

Indiana's supplemental program that helps families of children with serious, chronic medical conditions pay for treatment related to their child's condition. Provides financial assistance for children with severe chronic medical conditions who meet the financial eligibility guidelines.
ISDH/CSHCS
Section - 7B
2 North Meridian St.
Indianapolis, IN. 46204
CSHCS Customer Service: 800-475-1355
web site: http://www.in.gov/isdh/programs/cshcs/

 

Indiana Disability Resources - Family Village Community Center

A global community that integrates information, resources, and communication opportunities for persons with cognitive and other disabilities, for their families, and for those that provide them services and support. This site offers informational resources on specific diagnoses, communication connections, adaptive products and technology,adaptive recreational activities, education, worship, health issues, disability-related media and literature, and much, much more.
web site: http://www.familyvillage.wisc.edu/comm/indiana.html

 

Indiana Directory of Disability Resources

The purpose of the Indiana Directory of Disability Resources (IDDR) is to provide Hoosiers with a useful guide to disability services and to increase the public’s awareness of the available resources.
Breaking New Ground
Purdue University
ABE Bldg., 225 S. University Street
West Lafayette, IN 47907-2093
(800) 825-4264 or (765) 494-5013
web site: http://pasture.ecn.purdue.edu/~agenhtml/ABE/Extension/BNG/IDDR/

 

Indiana Parent Information Network (IPIN)

The Indiana Parent Information Network, Inc. (IPIN) is an organization of parents and professionals that was founded in 1987 to support children with special needs and their families by providing information, peer support, education, and building partnerships with professionals and communities.
4755 Kingsway Drive, Suite 105
Indianapolis, IN 46205
Phone: 1-800-964-IPIN (4746)
e-mail: familynetw@ipin.org
web site: http://www.ipin.org/

 

Indiana Protection and Advocacy Services

Provides information and support about the rights of children and adults with disabilities.
Phone: 800-622-4845
web site: http://www.in.gov/ipas/

 

Medicaid/Hoosier Healthwise

Public health insurance for children birth to age nineteen.
Phone: 800-889-9949
web site: http://www.in.gov/fssa/hoosier_healthwise/

 

Mental Health Association of Indiana

Resource of information to address mental health needs of children and families.
Phone: 800-555-6424
web site: http://www.mentalhealthassociation.com

 

Newborn Screening Services

Provide information and education about genetic conditions and services available to support families and communities.
Phone: 888-815-0006
web site: http://www.in.gov/isdh/programs/nbs/

 

People with Disabilities

Resource about Indiana services for children and adults with disabilities including vocational education.
Phone: 800-575-7763
web site: http://www.in.gov/fssa/servicedisabl/ddars

 

Sibshops: Riley Hospital for Children

Provides information and workshops for brothers and sisters of children with special needs.
Phone: 888-365-2022
web site: http://www.rileyhospital.org/document.jsp?locid=2391

 

Social Security Administration

Provides cash assistance to low income children and adults with disabilities.
web site: http://www.ssa.gov

 

Special Education

Special education programs through local school corporations for eligible children who qualify from the ages of 3 through 21.
Phone: 877-851-4106
web site: http://www.doe.state.in.us

 

State of Indiana Disability Resources

A listing of state government resources for individuals with disabilities.
web site: http://www.in.gov/ai/disability/

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KENTUCKY

Commission for Children with Special Health Care Needs

The Commission for Children with Special Health Care Needs provides direct care services to children with disabilities.
Commission for Children with Special Health Care Needs
982 Eastern Parkway
Louisville, KY 40217-1566
(502) 595-4459
(800) 232-1160
FAX: 502-595-4673
web site: http://chfs.ky.gov/ccshcn/

Family Voices - Kentucky

Partnering with professionals and families to advocate for health care services that are family-centered, community-based, comprehensive, coordinated and culturally competent.
web site: http://www.familyvoices.org/st/KY.htm

Families Information on Disabilities - FIND

FIND of Louisville addresses the need to enhance the knowledge and skills of parents of children with disabilities, to ensure their effective participation in decisions regarding educational and related services.
web site: http://www.findoflouisville.org/

 

Kentucky Cares Web site

KyCARES is an information directory and services guide which can help you connect with providers that offer basic services like housing, food, childcare, transportation, benefits information and much more.
web site: http://kycares.ky.gov/

 

Kentucky Disability Resources - Family Village Community Center

A global community that integrates information, resources, and communication opportunities for persons with cognitive and other disabilities, for their families, and for those that provide them services and support. This site offers informational resources on specific diagnoses, communication connections, adaptive products and technology,adaptive recreational activities, education, worship, health issues, disability-related media and literature, and much, much more.
web site: http://www.familyvillage.wisc.edu/comm/kentucky.html

 

KY-SPIN, Inc

Current programs include: SPIN PTI (SPIN Parent Training & Information Project)uses a “Families Training Families” model of training, information and support to families of children with all types of disabilities on the issues of laws, rights, listening and communication skills, and understanding their child’s disabilities.
websit: http://www.kyspin.com/

 

Youth Transition Resources

Helping young people move from school to work, pediatric to adult health care and living at home to independent living.
web site: http://chs.state.ky.us/commissionkids/transition.htm

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MICHIGAN

Children's Special Health Care Services - Michigan Dept. of Community Health

Children's Special Health Care Services (CSHCS) is a program within the Department of Community Health. It is for children and some adults with special health care needs and their families.
web site: http://www.michigan.gov/mdch/0,1607,7-132-2942_4911_35698-15087--,00.html

 

Michigan Disability Resources - Family Village Community Center

A global community that integrates information, resources, and communication opportunities for persons with cognitive and other disabilities, for their families, and for those that provide them services and support. This site offers informational resources on specific diagnoses, communication connections, adaptive products and technology,adaptive recreational activities, education, worship, health issues, disability-related media and literature, and much, much more.
web site: http://www.familyvillage.wisc.edu/comm/michigan.html

 

Michigan Newborn Screening Program

The Newborn Screening Program is conducted jointly with the Bureau of Laboratories. Program efforts assure that all Michigan infants receive newborn screening; follow-up for infants with positive screening tests have access to treatment and a medical home, and provides long-term follow-up and monitoring of health outcomes.
Phone: 517-335-9205
e-mail: mdch-newbornscreening@michigan.gov
web site: http://www.michigan.gov/mdch/0,1607,7-132-2942_4911_4916-64851--,00.html

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MINNESOTA

Minnesota Children with Special Health Needs

A state program that provides information about financial assistance and other resources available for individuals/families.
web site: http://www.health.state.mn.us/divs/fh/mcshn/index.htm

 

Minnesota Disability Resources - Family Village Community Center

A global community that integrates information, resources, and communication opportunities for persons with cognitive and other disabilities, for their families, and for those that provide them services and support. This site offers informational resources on specific diagnoses, communication connections, adaptive products and technology,adaptive recreational activities, education, worship, health issues, disability-related media and literature, and much, much more.
web site: http://www.familyvillage.wisc.edu/comm/minnesota.html

 

MinnesotaHelp.info

MinnesotaHelp.info is an online directory of services designed to help people in Minnesota identify resources such as human services, information and referral, financial assistance, and other forms of aid and assistance within Minnesota. It is especially rich in resource information for people with disabilities and their caregivers; parents and families; seniors and their caregivers; and low income people.
web site: http://www.minnesotahelp.info/en/mn/cgi-bin/location.asp

 

Minnesota Newborn Screening Program

Information for families and providers interested in learning more about the newborn screening program and the follow-up process in Minnesota.
web site: http://www.health.state.mn.us/divs/fh/mcshn/nbsdis.htm

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OHIO

Ohio Disability Resources - Family Village Community Center

A global community that integrates information, resources, and communication opportunities for persons with cognitive and other disabilities, for their families, and for those that provide them services and support. This site offers informational resources on specific diagnoses, communication connections, adaptive products and technology,adaptive recreational activities, education, worship, health issues, disability-related media and literature, and much, much more.
web site: http://www.familyvillage.wisc.edu/comm/ohio.html

 

Ohio Dept. of Health - Bureau for Children with Medical Handicaps (BCMH)

The mission of the Bureau for Children with Medical Handicaps is to assure, through the development and support of high quality coordinated systems, that children with special health care needs and their families obtain comprehensive care and services which are family-centered, community-based, and culturally sensitive.
Ohio Department of Health
Bureau for Children with Medical Handicaps
246 North High Street
P.O. Box 1603
Columbus, OH 43216-0118
Phone: (614) 466-1547
Fax: (614) 728-3616
E-mail: BCMH@odh.ohio.gov
web site: http://www.odh.ohio.gov/odhPrograms/cmh/bcmh/cmh1.aspx

 

Ohio Newborn Screening Program

Ohio currently mandates testing of all newborns for 30 disorders. Two of the mandated disorders, Phenylketonuria (PKU) and Homocystinuria are treated with a special metabolic formula provided through the Ohio Department of Health (ODH) Metabolic Formula Program.
web site: http://www.odh.ohio.gov/odhPrograms/phl/newbrn/nbrn1.aspx

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WISCONSIN

Wisconsin Disability Resources - Family Village Community Center

A global community that integrates information, resources, and communication opportunities for persons with cognitive and other disabilities, for their families, and for those that provide them services and support. This site offers informational resources on specific diagnoses, communication connections, adaptive products and technology,adaptive recreational activities, education, worship, health issues, disability-related media and literature, and much, much more.
web site: http://www.familyvillage.wisc.edu/comm/wisconsin.html

 

Wisconsin Newborn Screening Laboratory

Information for parents on the Newborn Screening program in Wisconsin, including information on the screening process and information on the screened disorders.
web site: http://www.slh.wisc.edu/newborn/parents_guide.php

 

Wisconsin Dept. of Health and Family Services -

Children and Youth with Special Health Care Needs (CYSHCN) Program
the CYSHCN Program works to support children and youth with special health care needs and their families.
web site: http://dhfs.wisconsin.gov/dph_bfch/cshcn/index.HTM

 

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NATIONAL RESOURCES

Association for Neuro-Metabolic Disorders

5223 Brookfield Lane
Sylvania OH 43560-1809
Phone #: 419-885-1497
Cheryl Volk, parent representative
e-mail: VOLK4OLKS@aol.com

 

Belgian Association for Metabolic Diseases (BOKS)

Alice Nahonlann 7
Melsele None 9120
Phone #: 323-775-4839
e-mail: info@boks.be
web site: http://www.boks.be

 

CLIMB (Children Living with Inherited Metabolic Diseases)

Climb Building
Crewe Intl CW2 6BG
Phone #: 44 -870- 7700 325
e-mail: info@climb.org.uk
web site: http://www.CLIMB.org.uk

 

Family Village

A global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide them services and support. This site offers informational resources on specific diagnoses, communication connections, adaptive products and technology,adaptive recreational activities, education, worship, health issues, disability-related media and literature, and much, much more.
web site: http://www.familyvillage.wisc.edu/index.htmlx

Genetic Alliance

4301 Connecticut Avenue NW
Washington DC 20008-2304
Phone #: 202-966-5557
800 #: 800-336-4363
e-mail: information@geneticalliance.org
web site: http://www.geneticalliance.org

March of Dimes Birth Defects Foundation

1275 Mamaroneck Avenue
White Plains NY 10605
Phone #: 914-428-7100
800 #: 888-663-4637
e-mail: Askus@marchofdimes.com
web site: http://www.marchofdimes.com

Metabolic Information Network

PO Box 670847
Dallas, TX 75367-0847
Phone: 214.696.2188
Fax: 214.696.3258 800-955-3258
E-mail: mizeg@ix.netcom.com

 

National Coalition for PKU and Allied Disorders

The National Coalition seeks to improve identification, treatment and management of PKU, MSUD. HCU, the OA's, UCD and Tyrosinemia through advocacy, education, support, promotion and support of research, and services complementing and assisting existing support groups and organizations.
Post Office Box 1244
Mansfield, Massachusetts 02048
Phone: 877-996-2723
web site: http://www.pku-allieddisorders.org/home.htm

 

New England Connection for PKU and Allied Disorders

E-mail: pkuconnect@aol.com
web site: http://www.necpad.org/home.htm

 

NIH/National Digestive Diseases Information Clearinghouse

2 Information Way
Bethesda MD 20892-3570
Phone #: 301-654-3810
800 #: 800-891-5389
e-mail: nddic@info.niddk.nih.gov
web site: http://www.niddk.nih.gov

 

NORD (National Organization for Rare Disorders)

55 Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813-1968
203-744-0100 or 1-800-999-6673 (voice mail) or TDD 203-797-9590
Fax: 203-798-2291
Email: orphan@rarediseases.org
Web site: http://www.rarediseases.org

 

STAR-G

Screening, Technology & Research in Genetics
CSHN Department of Health
741 Sunset Avenue
Honolulu, HI 96816
Phone: (808) 733-9039
Fax: (808) 733-9068
e-mail: info@newbornscreening.info
web site: http://www.newbornscreening.info/disorders.html

 

The Arc

1010 Wayne Ave
Silver Spring MD 20910
Phone #: 301-565-3842
800 #: 800-433-5255
e-mail: info@thearc.org
web site: http://www.thearc.org/

 

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