National Cerebral Palsy Awareness Month

Date: March 1- March 31, 2022

March is National Cerebral Palsy Awareness Month and is used to bring awareness and to educate the general public.

What is Cerebral Palsy?

Cerebral Palsy is a collection of motor disorders resulting from damage to the brain that can occur before, during and after birth. Congenital cerebral palsy indicates that a person developed cerebral palsy at birth which is the case of the majority of people with cerebral palsy. According to the Centers for Disease Control and Prevention (CDC), Cerebral Palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. It is the most common motor disability in childhood. It is estimated that an average of 1 in 345 children in the U.S. have cerebral palsy. For many years, it was thought cerebral palsy was due to lack of oxygen. Studies show this only accounts for 19% of all cases.

Prevalence and Characteristics
  • Around 764,000 people in the United states have at least one symptom of cerebral palsy
  • Around 10,000 babies are born each year with cerebral palsy
  • Boys are diagnosed more often than girls
  • Cerebral palsy is the mot commonly diagnosed childhood motor disability in the United States
  • Over 77% of children with cerebral palsy have the spastic form
  • More than 50% of all children with cerebral palsy can walk independently
  • African American children with cerebral palsy are 1.7 times more likely to need assistance with walking or be unable to walk at all
  • Around 41% of babies and children with cerebral palsy will have limited abilities in crawling, walking and running.
  • Around 41% children with cerebral palsy in the United states have some form of a cognitive disorder
  • Behavior problems are common in children with cerebral palsy including social skills and anger issues.
  • Seizures are a common associate disorder of cerebral palsy and can range from mild to extreme severe.
  • There is no known cure
What Causes Cerebral Palsy?

Studies show that about 10 to 20 percent of children with cerebral palsy acquire the disorder after birth. This includes through infections, jaundice, RH incompatibility and severe oxygen shortage in the brain.

Types of Cerebral Palsy

Ataxic- indicates the muscle tone is too low or too loose

  • affects 5 to 10 percent of people with cerebral palsy
  • movements are unsteady and shaking
  • have difficulty making quick movements

Spastic- refers to the inability of  muscle to relax

  • is the most common type of cerebral palsy
  • 70-80% of people have spastic cerebral palsy
  • will have difficulty moving from one position to another

Athetoid-uncontrolled twisting movements

  • Affects 10 to 20% of people with cerebral palsy
  • often have difficulty holding themselves in an upright position
  • muscles move involuntarily causing limbs to twitch

Classifications

Hemiplegia- The inability to move the arm and leg on one side of the body.

Diplegia-The inability to move either both arms or both legs.

Quadriplegia- A type of cerebral palsy that affects all limbs on both sides of the body

Monoplegia- A type of cerebral palsy that affects only one limb.

Resources

 

Study Reveals Increased Prevalence of Mental Illness in Adults with CP

Source: Cerebral Palsy News Today
Written by: Marisa Wexler

A recent study found that adults with cerebral palsy have a higher risk of developing mental health conditions, highlighting the need for better holistic care in this population.

The study, “Prevalence of Mental Health Disorders Among Adults With Cerebral Palsy: A Cross-sectional Analysis,” was published in the journal Annals of Internal Medicine.

Most research on cerebral palsy (CP) focuses on children because, until relatively recently, it wasn’t that common for people with CP to live through adulthood. That paradigm is rapidly changing, so it’s necessary for researchers and clinicians to understand the challenges adults with CP face so they can be given the best possible care and support to have not just a longer life, but higher quality of life. Click here to read the rest of the story.

What is a Developmental Disability?

March is Developmental Disabilities Awareness month! Although I blogged  the definition of developmental disabilities here, I wanted to give you more information besides the Federal regulation. Quite often, people are confused between the definition of an intellectual disability and a developmental disability.

A developmental disability is described as an assortment of chronic conditions that are due to mental or physical impairments or both. For example, you may have a child or an adult with an intellectual disability or perhaps a person diagnosed with cerebral palsy and an intellectual disability. It is also considered a severe and chronic disability that can occur up to the age of 22, hence the word developmental. A developmental disability can occur before birth such as genetic disorders (i.e. cri du chat, fragile x syndrome,) or chromosomes ( i.e. Down syndrome, Edwards syndrome); during birth (lack of oxygen) or after birth up to the age of 22 (i.e. head injuries, child abuse or accidents).

The disability is likely to occur indefinitely meaning the person will require some type of ongoing service throughout their lives. Finally, the person must show limitations in 3 or more of the following areas of major life activities:

  1. Self-care– brushing teeth, hand-washing and combing hair independently
  2. Receptive and expressive language-ability to understand someone talking and to also be understood
  3. Learning– ability to read and write with understanding
  4. Mobilityability to move around without any assistance
  5. Self-direction– time management, organization
  6. Capacity for independent living– requiring no supervision
  7. Economic self-sufficiency – having a job  and purchasing what one needs

Here are some examples of a developmental disability:

Does everyone with a disability also have a developmental disability?

The answer is no. there are people with disabilities such as epilepsy and cerebral palsy simply have a disability based on the criteria listed above. However, many people with developmental disabilities quite often have a combination of disabilities. For example a child with autism may also have seizures and an intellectual disability or an adult may have cerebral palsy, intellectual disability and epilepsy. In addition there are many people in the spectrum of autism who also have ADHD and so forth.

So what’s the difference between an intellectual disability and a developmental disability?

A person with an intellectual disability falls under the category of a developmental disability meaning you can have an intellectual disability and a developmental disability. check here for the definition of an intellectual disability, you will see they are quite similar. Below is an infographic created by Centers on Disease Control:

An Infographic on Developmental Disabilities.

 

 

National Association of Councils on Developmental Disabilities

Click to download a printed version

Through the Developmental Disabilities Assistance and Bill of Rights Act of 2000, created the State Councils on Developmental Disabilities which serves to coordinate and provide services for individuals with developmental disabilities. In the United States, there are 56 councils focusing on advocacy, systems change, and capacity building.

Alabama
Executive Director: Elmyra Jones-Banks
Phone: 334-242-3973
www.acdd.org

Alaska
Executive Director: Patrick Reinhart
Phone: 907-269-8990
www.dhss.alaska.gov

American Samoa
Executive Director: Norma Smith
Phone: 684-633-2696

Arizona
Executive Director: Erica McFadden
Phone: 602-542-8977
www.azdes.gov/addpc

Arkansas
Executive Director: Eric Munson
Phone/TDD: 501-682-2897
www.ddcouncil.org 

California
Executive Director: Aaron Carruthers
Phone: 916-322-8481
www.scdd.ca.gov

Colorado
Executive Director: Marcia Tewell
Phone/TDD: 720-941-0176
www.coddc.org

Commonwealth of the
Northern Mariana Islands
Executive Director: Pamela Sablan
Phone: 670-664-7000/1
www.cnmicdd.org

Connecticut
Executive Director: Melissa Marshall
Phone: 860-418-6160
www.ct.gov/ctcdd

Delaware
Executive Director: Pat Maichle
Phone: 302-739-3333
www.ddc.delaware.gov

District of Columbia
Executive Director: Mat McCollough
Phone: 202-724-8612
http://ddc.dc.gov

Florida
Executive Director:Valerie Breen
Phone: 850-488-4180
www.fddc.org

Georgia
Executive Director: Eric Jacobson
Phone: 888-275-4233
www.gcdd.org

Guam
Executive Director: Roseanna Ada
Phone: 671-735-9127
www.gddc.guam.gov

Hawaii
Executive Director: Waynette Cabral
Phone: 808-586-8100
www.hiddc.org

Idaho
Executive Director: Christine Pisani
Phone: 208-334-2178 or
1-800-544-2433
www.icdd.idaho.gov

Illinois
Executive Director: Kim Mercer
Phone: 312-814-2080
www.state.il.us/agency/icdd

Indiana
Executive Director: Christine Dahlberg
Phone: 317-232-7770
www.in.gov/gpcpd

Iowa
Executive Director: Becky Harker
Phone: 800-452-1936
http://iddcouncil.idaction.org

Kansas
Executive Director: Steve Gieber
Phone: 785-296-2608
www.kcdd.org

Kentucky
Executive Director: MaryLee Underwood
Phone: 502-564-7841
www.kyccdd.com

Louisiana
Executive Director: Sandee Winchell
Phone: 225-342-6804
www.laddc.org

Maine
Executive Director: Nancy Cronin
Phone: 207-287-4213
www.maineddc.org

Maryland
Executive Director: Brian Cox
Phone: 410-767-3670
www.md-council.org

Massachusetts
Executive Director: Dan Shannon
Phone: 617-770-7676
www.mass.gov/mddc

Michigan
Executive Director: Vendella Collins
Phone: 517-335-3158
www.michigan.gov/mdch

Minnesota
Executive Director: Colleen Wieck
Phone: 651-296-4018
www.mncdd.org

Mississippi
Executive Director: Charles Hughes
Phone: 601-359-6238
www.mscdd.org

Missouri
Executive Director: Vicky Davidson
Phone: 573-751-8611
www.moddcouncil.org

Montana
Executive Director: Deborah Swingley
Phone: 406-443-4332
Fax: 406-443-4192
www.mtcdd.org

Nebraska
Executive Director: Kristen Larson
Phone: 402-471-2330
www.dhhs.ne.gov/ddplanning

Nevada
Executive Director: Sherry Manning
Phone: 775-684-8619
www.nevadaddcouncil.org

New Hampshire
Executive Director: Isadora Rodriguez-Legendre
Phone: 603-271-3236
www.nhddc.org

New Jersey
Executive Director: Kevin Casey
Phone: 609-292-3745
www.njcdd.org

New Mexico
Executive Director: John Block III
Phone: 505-841-4519
www.nmddpc.com

New York
Executive Director: Sheila Carey
Phone: 518-486-7505
www.ddpc.ny.gov

North Carolina
Executive Director: Chris Egan
Phone/TDD: 919-850-2901
www.nccdd.org

North Dakota
Executive Director: Julie Horntvedt
Phone: 701-328-4847
www.ndscdd.org

Ohio
Executive Director: Carolyn Knight
Phone: 614-466-5205
www.ddc.ohio.gov

Oklahoma
Executive Director: Ann Trudgeon
Phone:  405-521-4984
www.okddc.ok.gov

Oregon
Executive Director: Jaime Daignault
Phone: 503-945-9941
www.ocdd.org

Pennsylvania
Executive Director: Graham Mulholland
Phone: 717-787-6057
www.paddc.org

Puerto Rico
Executive Director: Myrainne Roa
Phone: 787-722-0590
www.cedd.pr.gov/cedd

Rhode Island
Executive Director: Kevin Nerney
Phone: 401-737-1238
www.riddc.org

South Carolina
Executive Director: Valarie Bishop
Phone: 803-734-0465
www.scddc.state.sc.us

South Dakota
Executive Director: Arlene Poncelet
Phone: 605-773-6369
www.dhs.sd.gov/ddc

Tennessee
Executive Director: Wanda Willis
Phone: 615-532-6615
www.tn.gov/cdd

Texas
Executive Director: Beth Stalvey
Phone: 512-437-5432
www.tcdd.texas.gov

Utah
Executive Director: Claire Mantonya
Phone/TDD: 801-533-3965
www.utahddcouncil.org

Vermont
Executive Director: Kirsten Murphy
Phone: 802-828-1310
www.ddc.vermont.gov

Virgin Islands
Executive Director: Yvonne Peterson
Phone: 340-773-2323 Ext. 2137
www.dhs.gov.vi/disabilities

Virginia
Executive Director: Heidi Lawyer
Phone: 804-786-0016
www.vaboard.org

Washington
Executive Director: Ed Holen
Phone: 360-586-3560
www.ddc.wa.gov

West Virginia
Executive Director: Steve Wiseman
Phone: 304-558-0416
www.ddc.wv.gov

Wisconsin
Executive Director: Beth Swedeen
Phone: 608-266-7826
www.wi-bpdd.org

Wyoming
Executive Director: Shannon Buller
Phone: 307-777-7230
www.wgcdd.wyo.gov

 

Developmental Disability Acronyms You Should Know

Similar to special education, adult programs are full of acronyms that are used during meetings and in general conversation. Whether you are new to the field or a parent or caregiver with a child entering adult services, you will find this page useful as you navigate your way through adult services and programs.

Click here for a printed version

acronyms

 

Active Treatment (AT). A continuous, aggressive, and consistent implementation of a program of specialized training, treatment and related services that helps people function as independent as possible.

American Disabilities Act (ADA)- A civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life.

Assessment– A way of diagnosing and planning treatment for individuals with disabilities as part of their individual plan of service.

Autism Spectrum Disorder (ASD)- A group of development disorders that can cause significant social, communication and behavioral challenges.

Cerebral Palsy– A disorder that affects muscle tone, movement and motor skills.

Commission on the Accreditation of Rehabilitation Facilities (CARF)- An independent, non-profit accreditor of health and human service organizations.

Council on Developmental Disabilities-State Councils on Developmental Disabilities (Councils) are federally funded, self-governing organizations charged with identifying the most pressing needs of people with developmental disabilities in their state or territory. Councils are committed to advancing public policy and systems change that help these individuals gain more control over their lives.

Day Program– A day program to assist individuals in acquiring, retaining, and improving skills necessary to successfully reside in a community setting. Services may include assistance with acquisition, retention, or improvement in self-help, socialization, and adaptive skills; provision of social, recreational, and therapeutic activities to maintain physical, recreational, personal care, and community integration skills; and development of non-job task-oriented prevocational skills such as compliance, attendance, task completion, problem solving, and safety; and supervision for health and safety.

Developmental Disability– A group of conditions due to an impairment in physical, learning, language or behavior areas.

Developmental Center– residential facility serving individuals with developmental disabilities owned and operated by the State.

Habilitation– Service that help you keep, learn, or improve skills and functioning for daily living.

Human and Community Based Services (HCBS Waive)- Provides opportunities beneficiaries  for Medicaid beneficiaries to receive services  in their own home or community.

Health Insurance Portability and Accountability Act (HIPPA) – Protects individuals records and other personal information.

Intermediate Care Facilities (ICF/ID)- Medicaid benefit that enables states to provide comprehensive and individualized healthcare and rehabilitation services to individuals to promote their independence.

Independent Living Center (ILC)- Community-based resource, advocacy and training center dedicated to improving the quality of life for people with disabilities.

Individualized Service Plan (ISP)- Written details of the supports, activities and resources required for the individual to achieve personal goals.

Individual supported employment-  Competitive employment in the community in integrated business settings for comparable wages.  Paid support staff provides training on the job site as well as follow along services and supports to the individual and business as needed.
Job Coach– An individual employed to help people with disabilities learn, accommodate and perform their work duties including interpersonal skills.

Individualized Supported Living Arrangement (ISLA) – This residential service is provided to people with developmental disabilities and/or intellectual disabilities in their own homes or apartments.  The level of support provided is individualized to the person’s need for training and assistance with personal care, laundry, money management, etc.  Individuals who receive ISLA typically need a higher level of support than people in a Supported Living Arrangement (SLA).

Intellectual Disability–  a disability characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. This disability originates before the age of 18.

Least Restrictive Environment (LRE)- Individuals with disabilities should live in the community of their choice and receive the necessary services that will help them maintain their independence.

Level of Care- ICF eligibility determination

Person Centered Planning (PCP)- A set of approaches designed to assist someone to plan their life and supports. Used as an ongoing problem-solving process uses to help people with disabilities plan for their future.

Plan of Care– A document developed after the assessment that identifies the nursing diagnoses to be addressed in the hospital or clinic. The plan of care includes the objectives, nursing interventions and time frame for accomplishments and evaluation.

Provider-Typically private non-profit community organizations that provide vocational (and other types) of services to adults with disabilities.  These services are usually paid by state agencies.

Qualified Intellectual Disability Professional (QIDP) -Ensures individuals with Developmental and Intellectual disabilities receive continuous active treatment in accordance with Individual Support Plans (ISPs). Provide counseling, case management, and structured behavior programming to people with disabilities receiving Residential Services.  Responsible for the implementation of rules and regulations as required by licensing entities. Qualified Developmental Disability Professional (QDDP): Individual qualified to work as an expert with persons with developmental disabilities. The QDDP has a four-year college degree in an area related to developmental disabilities and a minimum of one-year experience working in that field.

Quality Assurance/Improvement (QA/QI)- Facilitate quality improvement activities to ensure compliance with accreditation standards regulations, funding source requirements, agency standards and assurance that all required manuals and procedures are maintained and implemented

Residential Care – Services provided in a facility in which at least five unrelated adults reside, and in which personal care, therapeutic, social, and recreational programming are provided in conjunction with shelter.  This service includes 24-hour on-site response staff to meet scheduled and unpredictable needs and to provide supervision, safety, and security.

Respite Care – Temporary relief to a primary caregiver for a specified period of time.  The  caregiver is relieved of the stress and demands associated with continuous daily care.
Self-Advocacy: an individual with disabilities speaking up and making their own decisions.

Self-Determination- Individuals have control over those aspects of life that are important to them, such as the services they receive, their career choices and goals, where they live, and which community activities they are involved in.

Service Coordination- Assists individuals with developmental disabilities and their families in gaining access to services and supports appropriate to their needs.

Supported Employment- Community based employment for individuals with disabilities in integrated work settings with ongoing training and support typically provided by paid job coaches.
Supported

Transition Services – Services provided to assist students with disabilities as they move from school to adult services and/or employment.