Organic Acid Disorders State and National Resources
Illinois
Indiana
Kentucky
Michigan
Minnesota
Ohio
Wisconsin
National Resources
Family Voices - Illinois
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/IL.htm
Illinois Department of Public Health Newborn Screening Fact Sheet for Organic Acid Disorders
Information for Physicians, other health care providers and families
interested in learning about OAD and the follow-up process in Illinois.
Illinois Dept. of Public Health
535 West Jefferson Street
Springfield, Illinois 62761
Phone 217-782-4977
Fax 217-782-3987
TTY 800-547-0466
web site: http://www.idph.state.il.us/HealthWellness/fs/organic.htm
Illinois 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/illinois.html
Illinois Life Span
Statewide information and advocacy coordination system for people with
developmental disabilities.
web site: http://www.illinoislifespan.org/
Illinois Network of Centers for Independent Living (INCI)
A statewide organization made up of 24 Centers for Independent Living
(CILs) in Illinois. CILs provide assistance for disabled persons in their
transition to independent living.
web site: http://www.incil.org/
University of Illinois at Chicago - Division of Specialized Care for Children
The Illinois Title V agency that provides care coordination and
cost-supported diagnosis and treatment for children with chronic health
impairments determined eligible for program support.
2815 West Washington,
Suite 300
P.O. Box 19481
Springfield, IL 62794-9481
Phone: 800-322-3722
e-mail: dscc@uic.edu
web site: http://www.uic.edu/hsc/dscc/
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/
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
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
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
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
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
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
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
Supports individuals with genetic conditions and their families. The Alliance
identifies solutions to emerging problems and works to reduce obstacles
to rapid and effective translation of research into accessible technologies
and services that improve human health.
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
IOGA—International Organization
for Glutaric Acidemia
An international, voluntary, and non-profit organization dedicated to
promoting early detection, preventing neurological damage, and assisting
in the treatment and rehabilitation of those affected by Glutaric Aciduria
Type I (GA1) and other neurological diseases.
E-mail: cswelch@helicon.net
Phone: (724) 459-0179
web site: http://www.glutaricacidemia.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
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
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
Organic Acidemia Association
13210 35th Avenue North
Plymouth MN 55441
Phone #: 763-559-1797
e-mail: OAANews@aol.com
web site: http://www.oaanews.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
Taking Action Against Language Disorders for Kids, Inc.
22980 Donna Lane
Bend OR 97701
Phone #: 503-389-0004
The Arc (a national organization on mental retardation)
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/
