Biotinidase 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.
e-mail: familyvoicesofillinois@yahoo.com
web site: http://www.familyvoices.org/states.php?state=IL
Illinois Department of Public Health Newborn Screening - Fact Sheet for Biotinidase Deficiency
Information for Physicians, other health care providers and
families interested in learning about BTD 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/biotinidase.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.
DSCC
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/
INDIANA
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/
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/
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
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
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 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.htm
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
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
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
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
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
NATIONAL RESOURCES
Association for Neuro-Metabolic Disorders
5223 Brookfield Lane
Sylvania OH 43560-1809
Phone #: 419-885-1497
e-mail: VOLK4OLKS@aol.com
Biotinidase Deficiency Support Group
This web site is devoted to supporting those affected by biotinidase
deficiency. Their mission is to establish a forum to exchange information
about biotinidase deficiency among affected individuals and with medical
professionals and to advocate for the inclusion of biotinidase testing
in all newborn screening programs.
web site: http://biotinidasedeficiency.20m.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
Gene Reviews
Expert-authored, peer-reviewed, current disease descriptions
that apply genetic testing to the diagnosis, management, and genetic
counseling of patients and families with specific inherited conditions.
BTD web page: http://www.geneclinics.org/profiles/biotin/
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
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
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
