Dealing with Cerebral Palsy: A Resource for Parents and Family

This post was authored by Jason Penn and posted to The Eye Opener on May 26th, 2011.

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Today’s society has become increasingly dependent on aggregators. We use a variety of methods to assemble and sort information so that we can easily consume it.  Mint.com and Quicken help with our finances and Google Reader helps to manage our online content. A quick search of the internet suggests that the parents of children with cerebral palsy do not yet have an objective aggregator of information to turn to.  Let’s consider this our attempt to provide parents in the Baltimore and Washington D.C. areas with a place to turn.

This is Part I of a several part series.¬† As we continue to provide you ‚Äď our readers‚ÄĒwith information, if there is anything that would prove helpful, please do not¬†hesitate¬†to let us know.

Here is the roadmap for our journey:

Part I:  Introduction:  You are not alone

Part II:  Education for your child.

Part III:  Medical Information for Parents

Part IV:  Cerebral Palsy Treatments and Therapies

Part V:  Legal Rights & Help

What is Cerebral Palsy?

httpv://www.youtube.com/watch?v=KRljnQTEBMo

Cerebral Palsy is a broad term used to describe a group of chronic movement or posture disorders. ‚ÄúCerebral‚ÄĚ refers to the brain, while ‚ÄúPalsy‚ÄĚ refers to a physical disorder, such as a lack of muscle control. Cerebral Palsy is not caused by problems with the muscles or nerves, but rather with the brain‚Äôs ability to adequately control the body. Cerebral Palsy can be caused by injury during birth, although sometimes it is the result of later damage to the brain. Symptoms usually appear in the first few years of life and once they appear, they generally do not worsen over time. Disorders are classified into four categories:

  • Spastic (difficult or stiff movement)
  • Ataxic (loss of depth perception and balance)
  • Athetoid/Dyskinetic (uncontrolled or involuntary movements)
  • Mixed (a mix of two or more of the above)

If you are the parent of a child with cerebral palsy the most important thing that you need to know is that you are not alone. Mike Sanders recently addressed this issue in his blog entitled The Daily Struggle of Raising a Disable Child. In addition to the private resources available to you (these resources will be covered in the upcoming segments), there are significant government resources available to Maryland area parents.  Here is a quick breakdown, courtesy of cerebralpalsy.org (please feel free to bookmark this page for easy access to these valuable contacts:

GOVERNOR’S OFFICE FOR INDIVIDUALS WITH DISABILITIES

Beatrice Rodgers, Director

Governor’s Office for Individuals with Disabilities
One Market Center, Box 10
300 West Lexington Street
Baltimore, MD 21201-3435
(410) 333-3098 (V/TTY)
E-mail: oid@clark.nett

Department of Education, Division of Special Education
Early Intervention Services
200 West Baltimore Street
Baltimore, MD 21201-2595
(410) 767-0238
E-mail: cbaglin@msde.state.md.us

Web: www.msde.state.md.us

PROGRAMS FOR INFANTS AND TODDLERS WITH DISABILITIES:
AGES BIRTH THROUGH 3
Deborah Metzger, Program Manager
Program Development and Assistance Branch
Division of Special Education
Early Intervention Services
200 West Baltimore Street
Baltimore, MD 21201
(410) 767-0237; (800) 535-0182 (in MD)

PROGRAMS FOR CHILDREN WITH DISABILITIES:
AGES 3-21
Jerry F. White, Program Manager
Department of Education
Division of Special Education
Early Intervention Services
200 West Baltimore Street
Baltimore, MD 21201
(410) 767-0249
E-mail: jwhite@msde.state.md.us

STATE VOCATIONAL REHABILITATION AGENCY
Robert Burns, Assistant State Superintendent
Division of Rehabilitation Services
Department of Education, Maryland Rehabilitation Center
2301 Argonne Drive
Baltimore, MD 21218-1696
(410) 554-9385
E-mail: dors@state.md.us
Web: www.dors.state.md.us/

OFFICE OF STATE COORDINATOR OF VOCATIONAL EDUCATION FOR STUDENTS WITH DISABILITIES
Mary Ann Marvil, Equity Specialist
Division of Career Technology and Adult Learning
200 West Baltimore Street
Baltimore, MD 21201
(410) 767-0536
E-mail: mmarvil@msde.state.md.us

STATE MENTAL HEALTH AGENCY
Oscar Morgan, Director
Mental Hygiene Admin.
Department of Health & Mental Hygiene
201 West Preston Street, Suite 416A
Baltimore, MD 21201
(410) 767-6655
E-mail: morgano@dhmh.state.md.us

STATE MENTAL HEALTH REPRESENTATIVE FOR CHILDREN AND YOUTH
Albert Zachik, Assistant Director
Mental Hygiene Administration
Child & Adolescent Services
Department of Health & Mental Hygiene
201 West Preston Street
Baltimore, MD 21201
(410) 767-6649

STATE MENTAL RETARDATION PROGRAM
Diane Coughlin, Director
Developmental Disabilities Administration
Department of Health & Mental Hygiene
201 West Preston Street, Room 422C
Baltimore, MD 21201
(410) 767-5600
E-mail: coughlind@dhmh.state.md.us

STATE DEVELOPMENTAL DISABILITIES PLANNING COUNCIL
Mindy Morrell, Executive Director
MD Developmental Disabilities Council
300 West Lexington Street, Box 10
Baltimore, MD 21201-2323
(410) 333-3688
E-mail: MDDC@erols.com

PROTECTION AND ADVOCACY AGENCY
Philip Fornaci, Executive Director
Maryland Disability Law Center
1800 N. Charles, Suite 204
Baltimore, MD 21201
(410) 727-6352; (800) 233-7201
E-mail: philf@MDLCBALTO.org

CLIENT ASSISTANCE PROGRAM
Peggy Dew, Director
Client Assistance Program
Department of Education
Division of Rehabilitation Services
2301 Argonne Drive
Baltimore, MD 21218
(410) 554-9358; (800) 638-6243
Web: www.dors.state.md.us/cap.html

PROGRAMS FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS
Sandra J. Malone, Chief
Department of Health & Mental Hygiene
Children’s Medical Services Program- Unit 50
20l West Preston Street
Baltimore, MD 21201
(410) 225-5580; (800) 638-8864
E-mail: Malones@DHMH.state.md.us

STATE EDUCATION AGENCY RURAL REPRESENTATIVE
Jerry White, Program Manager
Program Administration & Support
Division of Special Education/Department of Education
200 West Baltimore Street, 4th floor
Baltimore, MD 21201
(410) 767-0249
E-mail: jwhite@msde.state.md.us

REGIONAL ADA TECHNICAL ASSISTANCE AGENCY
ADA Information Center for Mid-Atlantic Region
TransCen, Inc.
451 Hungerford Drive, Suite 607
Rockville, MD 20850
(301) 217-0124 (V/TTY); (800) 949-4232 (V/TTY)
E-mail: adainfo@transcen.org
Web: www.adainfo.org

DISABILITY ORGANIZATIONS
Attention Deficit Disorder
To identify an ADD group in your state or locality, contact either:
Children and Adults with Attention-Deficit/Hyperactivity Disorder (CH.A.D.D)
8181 Professional Place, Suite 201
Landover, MD 20785
(301) 306-7070
(800) 233-4050 (Voice mail to request information packet)
E-mail: national@chadd.org
Web: www.chadd.org

National Attention Deficit Disorder Association (ADDA)
P.O. Box 1303
Northbrook, IL 60065-1303
E-mail: mail@add.org
Web: www.add.org

Autism Society of America
7910 Woodmont Avenue, Suite 300
Bethesda, MD 20814
(301) 657-0881; (800) 3-AUTISM
Web: www.autism-society.org

Alicia Brain Injury
Brain Injury Association of Maryland
Kernan Hospital
2200 Kernan Drive
Baltimore, MD 21207
(410) 448-2924;
(800) 221-6443 (in MD)
Website: http://www.biamd.org
E-mail: info@biamd.org

Cerebral Palsy
Mitzi Bernard, Executive Director
United Cerebral Palsy of Southern MD
49 Old Solomons Island Rd., Suite 301
Annapolis, MD 21401
(410) 897-9545
E-mail: somducp@earthlink.net
Web: www.sitestar.com/ucp/

Lee Kingham, Executive Director
Epilepsy Association of MD
Hampton Plaza, Suite 1103
300 East Joppa Road
Towson, MD 21286
(410) 828-7700; (800) 492-2523 (in MD only)

Learning Disabilities Association of MD
76 Cranbrook Road, Suite 300
Cockeysville, MD 21030
(800) 673-6777

Linda Raines, Executive Director
Mental Health Association of Maryland
711 West 40th Street, Suite 428
Baltimore, MD 21211
(410) 235-1178

NAMI MD
711 W. 40th St., Suite 451
Baltimore, MD 21211
(410) 467-7100; (800) 467-0075
E-mail: amimd@AOL.com
Web: amimd.nami.org/amimd/

Cristine Boswell Marchand, Executive Director
The Arc of Maryland
49 Old Solomons Island Road, Suite 205
Annapolis, MD 21401
(410) 571-9320; (410) 974-6139 (In Balt.)
E-mail: cmarchand@thearcmd.org

Speech and Hearing
Rosalie Nabors, President
MD Speech-Language-Hearing Association
P.O. Box 31
Manchester, MD 21102
(800) 622-6742

Division of Special Education, Early Intervention Services
Department of Education
200 West Baltimore Street, 4th floor
Baltimore, MD 21201
(410) 767-0652; (800) 535-0182 (in MD only)

Parents of children in Washington D.C., part II of this series will provide you with a comprehensive list of the government-based agencies available to support your needs. ¬† Additionally, we will take a look at the challenges faced by parents that are looking for educational resources–of all varieties– for their children.

For a primer for part II of this series, see our prior piece entitled IEP’s: Stand Up for Your Child’s rights – Be Their Best Advocate.

 

Related Posts:

CDC Features – Date Show 1 in 303 Children Have Cerebral Palsy

 

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