To Parents of
Children with Developmental Disabilities. . .
It is our hope that as parents you will always consider yourselves the experts on your child. We hope that as you seek information, help, and guidance, you will see your child in "people first" terms - initially as a baby to love and nurture, then as a child to raise for as independent a life as he or she can attain. Whatever the disability involved, remember it is only a part of your child's individuality. Build on his or her strengths. High expectations are a keynote in a family's daring to act bravely and creatively.
You may want to review these recommendations periodically,
and add to or
revise them to fit your specific circumstances.
The book and periodical titles that are preceded by an asterisk (Y) are available from the St. Louis County Library.
Copy this checklist booklet freely and without restriction.
o Contact a family support group--an invaluable
network and source for information and ideas.
Resources:
o Alliance for the Mentally Ill - NAMI St. Louis, MO
314-966-4670
o Family Support Service
(314) 989-8438, (314) 989-8108, (314) 989-8194
(314) 963-1450
o Judevine Center for Autism
(314) 849-4440
o Missouri Developmental Disabilities Resource
Center
1-800-444-0821
o Talk with other families who have a
child with a disability, including those with a child older than yours, as they
may have experiences from which you could benefit.
Resource:
o MPACT
(Missouri Parents Act)
Parent-to-parent connection program
1-800-743-7634
www.ptimpact.com
o Sharing
Our Strengths (SOS) Support Matching Network
1-800-773-8652
www.sharingourstrengths.com
Books for additional Insight:
Hope for the Families. Robert Perske.
Abingdon Press, 1981.
Since Owen: A Parent-to-Parent Guide of the Disabled Child. Charles R.
Callahan. The John Hopkins University Press, 1990.
After the Tears. Robin Simons, Harcourt-Brace- Jovanovich,
1987.
o Contact Regional Center to determine
your child's eligibility for services as soon as your child has been identified
as "at risk" for having a disability. Regional Center is a state-funded agency that will coordinate
services that your child and you might need.
Registration can be a lengthy process.
Once registered, it is important to keep in touch with your case manager
to keep your case active.
o St. Louis Regional Center for the
Developmentally Disabled
St.LouisCountySt. Louis CitySt. Charles
211 North Lindbergh Blvd. 3101
Choteau119 Olympic Way
St. Louis, MO 63141 St. Louis, MO 63139
St. Peters, MO 63376
314-340-6500 314-301-3900
636-926-1200
Ask
for the Intake Department. A family
member (not a professional) must make the call.
Regional Center will also accept a
note requesting an application to receive services. Be sure to include:
¨ Your child's name and address
¨
Your child's Social Security Number
¨
Your child's Medicaid Number (if any)
¨
Names of doctors, hospitals or clinics that have seen your
child
¨
The last school you child attended
¨
Any vocational training received
¨
Whether your child receives SSI
¨
Whether or not you can be reached by phone
o City Residents:
Contact Project Casefind through the St. Louis Office of MR/DD Resources for
help with the application process
314-421-0090
o Get medical and educational evaluations. They
are important to identify your child's strengths and needs.
o Begin therapy/intervention at the earliest age possible.
Resources:
o First Steps Program, Birth to age 3
Early intervention services for children
314-993-3400
o Explore school options--both public
and private. Examine possibilities of
integration and inclusion.
Resources:
o Contact your
Regional Center case manager to learn about and discuss the various options.
City: 314-301-3900
o County
residents: Contact your local school district when your child is 2 years, 9
months old for
a
free evaluation. Your child must be
referred from your local school to the St. Louis County
Special School District. Some local
districts have their own Early Childhood programs.
o City residents:
Contact the Office of Special Education when your child is 2 years, 6 months
old to set up an appointment for an evaluation.
314-454-0010
Books for additional
Insight:
Opening
Doors: Strategies for Including All Students in Regular Education.
C. Beth Schaffner and Barbara E. Buswell. PEAK Parent Center, Inc. Publishers,
1991.
Negotiating
the Special Education Maze: A Guide for Parents and Teachers.
Winifred Anderson, Stephen Chitwood and Deidre Hayden. Prentice (Woodbine
House), 1990.
From Emotions to Advocacy: The Special Education Survival Guide. Pam Wright & Pete Wright. Harbor House Law Press, Inc., 2004
"Parent's Guide to Special Education
in Missouri."
1-573-751-0699
http://dese.mo.gov/divspeced
o Apply for Supplemental Security Income (SSI). There are income and eligibility requirements, but it may be worthwhile to apply.
Under age 18, child's eligibility is based on parent's
income.
Over
age 18, self-eligibility.
Resource:
o Social
Security Administration
1-800-772-1213
www.ssa.gov
Or
visit a Social Security office listed in the Blue Pages of the telephone
directory under "Government Offices, United States."
o Take your child out into the community--(e.g.
restaurants, shopping, errands, entertainment, library, church, vacations.)
This is an excellent way for your child to learn appropriate behavior and just
to have fun.
Resource:
o St.
Louis Links, listing attractions in St. Louis
www.cityhits.com
o Talk to your child about
various jobs in the community.
o Participate in
Community Based Instruction.
o Encourage your child to make choices and decisions.
o Encourage your child
to volunteer in the community.
o Attend workshops on assertiveness and advocacy training. Parents
generally are their child's best advocate.
There are advocacy agencies in the community available to help you with
particular challenges.
Resources:
o DESE - Department of
Elementary and Secondary Education
www.dese.state.mo.us
o MPACT (Missouri
Parents Act)
1-800-995-3160
o Family
Services and Diversity of Special School District
Information on currentseminars, workshops, conferences and upcoming events.
www.ssd.k12.mo.us
314-989-8438314-989-8108314-989-8194
o Legal Services of
Eastern Missouri
4232 Forest Park Ave.,
St. Louis, MO 63108
ww.mobar.org 314-534-4200
o Missouri Protection and Advocacy Services
no-charge individual
advocacy assistance when human rights are violated.
1-800-392-8667
o Office for Civil
Rights
www.ocr.gov
o Partners in Policymaking in Systems Change
1-800-500-7878
Books for additional
Insight:
Making Your Case, 1994. Available from Minnesota Governor's Planning
Council on Developmental Disabilities. 1-612-296-4018
How to Get Services by Being
Assertive. Charlotte DesJardins,
1993. (call 314-989-8438 to inquire)
o Get on mailing lists of
organizations for persons with disabilities.
Resources: (Missouri)
o MPACT (Missouri
Parents Act)
1-800-743-7634
www.ptimpact.com
o St. Louis ARC (Association for Retarded
Citizens)
1816 Lackland Hill Parkway -
Suite 200
St. Louis, MO 63146
www.slarc.org314-569-2211
Brochures available
describing services and activities
o Life Skills Foundation
10176 Corporate Square Drive -
Suite 100
St. Louis, MO 63132
www.lifeskills-stl.org314-567-7705
Serves persons with
developmental disabilities with a major focus on adults.
o MO-TASH (Missouri Chapter of the Association
for Persons with Severe Handicaps)
Contact: Jocelyn Jones-Waller
314-567-7705, ext. 3321
Brochures available describing services and activities
o Recreation Council of Greater St. Louis
200 S. Hanley Rd.
St. Louis, MO 63105
314-726-6044 County residents
314-772-2299 City residents
www.stlouis.missouri.org/reccouncil
Free quarterly
newsletters: "Leisure
Network" - County
"Calendar of
Events" – City
o College for Living - Paraquad
311 N. Lindbergh Blvd
St. Louis, MO 63131
www.paraquad.org/cfl.htm314-569-1324
Classes for people
with developmental disabilities age 18 and older, plus Community Education
o APSE-MO (Missouri Chapter of the Association
for Persons in Supported Employment)
Rehabilitation Training & Education Center, UMKC
8503 N. Wayland
Kansas City, MO 64153
1-816-891-9082
o PLB
(Productive Living Board for St. Louis County Citizens with
Developmental Disabilities)
121 Hunter Ave -
Suite 200
St. Louis, MO 63
www.plboard.com314-726-2606
Newsletter: "PLB Update"
o MR/DD (St. Louis Office for Mental Retardation
and Developmental Disability Resources)
Service
Coordination Available
2334 Olive Blvd.
314-421-0090
o CISE (Center for Innovations in Special
Education)
Parkade Center, Suite 152
601 Business Loop, 70 West
Columbia, MO 65211-8020
www.cise.missouri.edu
1-800-976-2473
(Missouri only)
1-573-884-7275
(Outside Missouri)
o Missouri Developmental Disabilities Resource
Center
University of
Missouri--Kansas City
www.moddrc.com1-800-444-0821
o Missouri Planning Council
P.O. Box 687
Jefferson City, MO 65102
www.mpcdd.com
1-800-500-7878
Newsletter: "DD News"
o Gateway Regional
Advisory Council
3101 Chouteau
St Louis, MO
stlgrac@mindspring.com
314-301-4918
Resources: (Out-of-State)
o Beach Center on Families and Disability
c/o Institute on Life
Span Studies
3111 Haworth Hall
University of Kansas
Lawrence, KS 66045
www.beachcenter.org
913-864-7600
Free Newsletter: "Families & Disability Newsletter"
o Minnesota Governor's Planning Council on
Developmental Disabilities
300 Centennial Office Building
658 Cedar Street
St. Paul, MN 55155
www.mncdd.org 1-612-296-4018
o National Information Center for Children
P.O. Box 1492
Washington, D.C. 20013
www.nichcy.org1-800-695-0285
Free periodicals including a semi-annual "Transition Summary"
o Pacer Center, Inc
4826 Chicago Avenue, South
Minneapolis, MN 55417-1098
1-612-827-2966
Newsletter: "Pacesetter"
o PEAK Parent Center, Inc
6055 Lehman Drive, Suite 101
Colorado Springs, CO 80918
1-719-531-9400
Newsletter: "sPEAK out"
o St. Louis County Library
1640 South Lindbergh Blvd.
St. Louis, MO 63131
www.slcl.lib.mo.us
314-994-3300
Books,
periodicals and videos for families of individuals with developmental
disabilities.
An annotated
bibliography is available at all branches.
o St. Louis Public Library
1301 Olive
St. Louis, MO 63103
314-241-2288
o Family and Community Resource Center
St. Louis County Special School District
Central Administrative Offices
12110 Clayton Rd.
St. Louis, MO 63131
314-989-8108
Books, videos,
awareness materials, newsletters, & pamphlets.
Many take-home
materials available for free.
o Subscribe to
pertinent publications. There are a number of publications
focusing on specific disabilities. One
magazine that can be helpful for families of a child with any developmental
disability is:
P.O. Box 2079
Marion, OH 43301
1-877-372-7368 (Toll Free)
See the most recent January issue for a
directory that lists both information and advocacy groups and national
organizations for specific disabilities
o Council for Exceptional Children (CEC) Parent
Division
1110 North Glebe Road, Suite 300
Arlington, VA 22201-5704
www.cec.sped.org
703-620-3660
o Access respite care. A generous number of respite care hours are
free to city and county residents, regardless of income. Respite care services are available in your
home, in the provider's home, in residential centers, or in daytime centers.
Resources:
o St. Louis Respite Care Coalition
Free pamphlet listing the various agencies that provide respite care
314-569-0247 (ARCH Office)
o County Residents: Call your Regional Center
case manager for referrals. If you
don't have a case manager yet, call the Productive Living Board at 314-726-2606.
o City
Residents: You are expected to have a Regional Center case manager in order to
access respite care. If you don't have
a case manager and need crisis intervention or general information, call the
St. Louis Office of MR/DD Resources at 314-421-0090.
Resources:
o St. Louis City
Public Schools
Contact your school counselor or resource teacher at your local school for
workshop offerings and resource directory
o St.
Louis County Special School District
www.ssd.k12.mo.us
314-989-8438314-989-8108314-989-8194
o Office for
MR/DD Resources Education Advocate
314-421-0090 Ask for the Education Coach
o Go to your child's IEP with your own specific goals tailored
to his/her needs. Invite knowledgeable, supportive advocates. such as your
Regional Center case manager, parent advocate, family friend, or student peer
who is non-disabled.
Books for additional insight:
Better IEPs: How to Develop Legally
Corect & Educationally Useful Programs. Barbara D. Bateman and Mary Anne Linden. Sopris West, 1998.
The IEP – A Tool for Realizing
Possibilities. PEAK Parent Center
video, 1998.
o Begin estate planning. Keep
your will/trust up-to-date. Keep current with related federal and state
legislation. Be certain your attorney is aware of current legal precedents
impacting persons with disabilities (e.g., Tidrow trust). Do some good basic
reading on estate planning prior to visiting your lawyer.
Books for additional insight:
Disability and the Family: A
Guide to Decisions for Adulthood. H. Rutherford
Turnbull III, Ann
P. Turnbull,
G.J. Bronicki, Jean Ann Summers, Constance Roeder-Gordon. Paul H. Brookes
Publishing Co., 1989.
Planning for the Future: Providing a
Meaningful Life for a Child with a Disability After Your Death. Mark L.
Russell. American Publishing Co., 1983.
Planning for Disability. William
Dussoult, J.D. (A study prepared for the Northwestern Mutual Life Insurance
Company. Last revised in 1998. Available through a Northwestern Mutual agent.)
Northwestern Mutual Life Insurance
Company
7733 Forsyth, Suite 1000
St. Louis, MO 63105
Contact Person: John J. Kang
314-721-7799
Nominal cost; in soft cover
A Family
Handbook on Future Planning - a free
download
www.thearc.org - scroll down to find the
planning handbook
Resourc
o Missouri
Family Trust Fund
1500 Vandiver Dr, Suite 100
Columbia, MO 65202
1-888-671-1069
o Compass Financial
314-514-1400
o Give your child responsibilities at home
to foster personal self-care, cooking and laundry skills, as well as
job-related skills.
o Encourage your child to use technology and assistive
technology. Fo
Books for additional insight:
Circles of Friends: People with
Disabilities and Their Friends Enrich the Lives of One Another. Robert
Perski. Abingdon Press, 1988.
Connecting Students: A Guide to
Thoughtful Friendship Facilitation for Educators and Families. C. Beth
Schaffner and Barbara E. Buswell. PEAK Parent Center, Inc., 1992. (To order,
call 1-800-284-0251. Cost $9.50, shipping included)
Friends:
A Manual for Connecting Persons with Disabilities and Community Members.
1990. Available through Minnesota Governor's Planning Council on Developmental
Disabilities. Call 1-612-296-4018.
Learning Disabilities
& Social Skills with Rick Lauvie: Last One Picked…First One Picked On. PBS video, 1994.
Helping the Child Who
Doesn’t Fit In.
Stephen Nowick, Jr.
Childswork/Childsplay, 1992.
Friendships and
Community Connections Between People With and Without Developmental
Disabilities.
Angela Novak Amado. Paul Brookes
Publishing, 1993.
o Explore weekend and summer activities to
promote independence; camp can be a valuable experience.
For all three of the above recommendations, contact the
Recreation Council of Greater St. Louis and request a copy of their free "Guide
to Leisure Services," which gives a comprehensive, descriptive listing of
recreation activities in the St. Louis area.
Services listed comprise both those specifically designed for people
with disabilities, as well as programs for the general public that include
people with disabilities.
Supplementing
the guide are free quarterly newsletters published for city and county
residents.
Resource:
o Recreation
Council of Greater St. Louis
314-726-6044
County Residents and TDD users
314-772-2299
City Residents
http://stlouis.missouri.org/reccouncil
Resources:
o Family Support Network
314-963-1450
Provides assistance for families who have a member with a disability.
o Judevine Center for Autism
314-849-4440
Groups for ages 7 through 12.
Books for additional
insight:
Living
with a Brother or Sister with Special Needs: A Book for Sibs.
Donald J. Meyer, Patricia F. Vadasy, Rebecca R. Fewell. University of
Washington Press, 1985.
Brothers and Sisters--A Special part of
Exceptional Families. Thomas H. Powell. Paul H. Broodes Publishing Co.,
1985
Brothers, Sisters and Special Needs.
Debra J. Lobato. Paul H. Brookes Publishing Co., 1990
Sibshops: Workshops for Siblings of
Children With Special Needs. Donald
Meyer. Paul Brookes Publishing, 1994.
(In addition, see all previous recommendations)
o Begin formal personal
futures planning. Set preliminary goals for supported
employment, socialization, and supported independent living.
Books for
additional insight:
It's Never Too Early, It's Never Too
Late: A Booklet for Personal Futures Planning. Beth Mount and Kay Zwernik.
1989. A free copy is available from:
Minnesota Governor's
Planning Council on Developmental Disabilities
300 Centennial Office Building
658 Cedar Street
St. Paul, MN 55155
1-612-296-4018 (Phone)
Full Life Ahead: A workbook and Guide to Adult Life for Students and families of Students with Disabilities. Judy Barclay and Jan Cobb. SERRC Auburn University, Mongomery, AL 36124, 2001
Disability and the Family: A Guide to
Decisions for Adulthood. H. Rutherford Turnbull III, Ann P. Turnbull, G.J.
Bronicki, Jean Ann Summers, Constance Roeder-Gordon. Paul H. Brookes Publishing
Co., 1989.
Transition from
School to Work. Paul Wehman, M. Sherrill Moon,
Jan Everson. Paul H. Brookes Publishing Co., 1987.
Life Beyond the
Classroom: Transition Strategies for Young People with Disabilities.
Paul Wehman, Paul H. Brookes Publishing Co., 1992.
o Be sure your child has begun to learn community access
skills, such
as using public telephone, public transportation, community recreation,
ordering from a menu, locating public restrooms, keeping safe.
o Prepare your child for social/sexual development.
Know that your son or daughter will not be a child forever and prepare to give
understanding and support.
Resources:
o College
for Living
314-963-0545
o Family Services & Diversity of Special School
District
314-989-8100
Books for additional insight:
Caution: Do Not Open
Until Puberty! An Introduction to Sexuality for Young Adults with Disabilities.
Rick Enright. Devinher House, Sparta, Ontario, Canada, 1995.
Changes in You by Peggy Siegel. (Boys and girls versions, written with children with disabilities in mind). Family Life Education Associates, 1991
Just Say Know! Understanding and Reducing the Risk of Sexual Victimization of People with Developmental Disabilities. Dave Hingsburger. Diverse City Press, Inc., 1995 (Boys and girls versions, written with children with disabilities in mind). Family Life Education Associates, 1991
Sexuality: Your Sons and Daughters with Intellectual Disabilities. Karin Melberg Schwier & Dave Hingsburger, Paul H. Brookes Publishing Co., 2000.
Videotapes:
Circles. Videotapes regarding safe behavior and relationships for teens and adults with developmental disabilities. James Stanfield Publishing.
Child Sexual Abuse: A Solution Videotapes for parents,
teachers and children K-6. James Stanfield Publishing.
(In addition, see all previous recommendations)
o Prepare for the Transition Plan,
a component of the IEP. Set specific, individual goals of substance.
For a copy of the
Federal Law (with user-friendly interpretation) mandating that transition be
included in the IEP, contact:
Center for Innovations in Special
Education (CISE)
1-800-976-2473 (Missouri only)
1-573-884-7275 (Outside Missouri)
o Include community-based vocational instruction in the
Transition Plan of the IEP. Look into natural
supports. If none of the existing programs meets your child's needs, consider
designing volunteer, job training, and work experience programs, and ask
the service provider agencies to implement your idea.
Resources:
o Special School
District of St Louis County Transition Programs
314-989-8100
o St. Louis Public Schools
Office of Special Education
314-454-0010
o SummerWork Experience Programs (SWEP)
Contact:JESS at314-644-1913
Books for additional
insight:
Vocational and Transition Services for Adolescents with Emotional And Behavioral Disorders. Michael Bullers and H.D. Fredricks, Co-publishes by Research Press and Behavioral Institute for Children and Adolescents, 2002.
Natural Supports in School, at Work, and in the Community for People with Severe Disabilities. Edited by Jan Nisbet, Paul H. Brookes Publishing Company, 1992.
Creating Individual
Supports for People with Developmental Disabilities.
Edited by Valerie J. Bradley, John W. Ashbaugh and Bruce Blaney. Paul H.
Brookes Publishing Co., 1994.
o Monitor the Transition Plan and the IEP. Frequently
re-evaluate and revise as necessary.
o Attend workshops on transition. Learn what
options are currently available, as well as what new, cutting-edge ideas are
being tried in other parts of the country.