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.

 

 

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Stress Is An Added Dimension For Those With Disabilities

Stress Is an Added Dimension for Those with Disabilities
Written by: Jessica Grono
Published by: Cerebral Palsy News Today

A common question many people ask of us who have disabilities is, “How do you do it every day?” Or, my favorite comment, “I don’t know how you do it! I couldn’t handle doing what you go through.” My initial reaction is to feel a bit offended and annoyed because, really, what choice do I have? I am just living my life as anyone would and making the best of it. But I forget to ask myself if I am living my life as anyone else would. Read the rest of the story here.

National Association of Councils on Developmental Disabilities

 

NACDD

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.

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.

March Special Needs Article Links

Welcome to the March article links and resources. These are articles that I  tweeted during the month of March on special needs and developmental disability topics. I tweet articles and links everyday.

  1. 4 ways parents of children with special needs can prepare for a natural disaster-Think Inclusive
  2. 5 special things you might not knowing about autism– Autism Parenting Magazine
  3. 5 things to consider when planning a sensory room– Friendship Circle
  4. 5 ways to support students with sensory processing disorder– Teach Thought
  5. 10 tips to help kids with autism cope with divorce– Modern Mom
  6. 15 things I’ve learned in 15 years as a special education teacher– Think Inclusive
  7. 16 people with autism describe why eye contact can be difficult– The Mighty
  8. Cerebral palsy, ADHD, autism and epilepsy may overlap in older children-Bel Marra Health
  9. Classroom strategies for teaching children with autism– ASD Teacher
  10. Disabilities in infants after heart surgery- American Academy of CPR and First Aid
  11. How 2016 is set to be a breakthrough year for actors with autism on stage and screen– Evening Standard
  12. How can we do better by our autistic girls?- Blog Her
  13. How to manage ADHD at work– Biz News
  14. I have autism, but I have autistic friends– The Mighty
  15. Many on the Spectrum have SPD. But what is it exactly?-Theautismsite.com
  16. More effective speech therapy approach for children with Down syndrome– Science News
  17. Reducing the stress in moms of children with autism– Mother Nature Network
  18. Shelter animals making a difference in the lives of children with autism– One Green Planet
  19. The characteristics of ADHD- True Hope
  20. Tips on parenting a child with Down syndrome– Parent Herald
  21. Tommy Hilfiger debuts adaptive clothing line- Disability Scoop
  22. Why autism spectrum disorders are under-diagnosed in women and girls – ABC Radio Nation (Australia)

Thanksgiving and Mealtime Precautions

mealtime_thanksgiving_logo

Thanksgiving is the day set aside in the United States and Canada as a day of pausing to reflect all that we are thankful for by connecting with friends and family over good food. It is also the day of taking special precautions when serving people with developmental disabilities.

Aspiration is a huge risk during the holiday season. Factors that place people at risk for aspiration includes the following:

  • Being fed by someone else
  • Poor chewing or swallowing skills
  • Weak or absent coughing/gagging reflexes which is common in people with cerebral palsy or muscular dystrophy
  • Eating to quickly
  • Inappropriate fluid consistency
  • Inappropriate food texture

For children and adults with autism, Thanksgiving may be a challenge for a variety of reasons:

  • Sensory and emotional overload with large groups
  • Picky eaters
  • Difficulty with various textures of food

To help you mange Thanksgiving with ease, click on the articles below:

8 tips for managing Thanksgiving with children with autism

Autism and Thanksgiving: How to cope with the feasting and hubbub

Feeding kids with sensory processing disorders

Preparing for Thanksgiving on the autism spectrum

Swallowing problems? What to do about Thanksgiving

Thanksgiving dinner ideas for speech therapy activities

Tips for Navigating Thanksgiving on the Spectrum

 

 

September Special Needs Resource Article Links

article link header

Welcome to the September Article Links. These are articles that I have tweeted during the month of September. I tweet articles and links everyday. Please make sure you follow me and I will follow you back!

  1. Girls and boys with autism differ in behavior, brain structure
  2. What about mom? Reducing stress in mothers of children with autism.
  3. 8-year-old with cerebral palsy is launching a modeling career
  4. 10 must have products for individuals with cerebral palsy
  5. What every parent should know about an IEP and a 504 plan
  6. Greatest risk for cerebral palsy occur before birth
  7. Adults with sensory processing disorder, you are not alone
  8. The Forgotten history of autism
  9. 47 hacks people with ADD/ADHD use to stay on track
  10. Top four things you need to know when hiring people with disabilities
  11. Create a better classroom for kids with autism
  12. I’m a special education teacher. Here is what I want parents to know
  13. Autism: The number 1 thing you can do to help your child
  14. Living with an invisible disability
  15. Top 10 trends in special education

July Special Needs Resource Article Links

article links

Each month, I will post articles on developmental disabilities and special needs that I tweeted from my feed. The articles will cover a variety of articles including, autism, special education , epilepsy, cerebral palsy, down syndrome and more!

 

Spiking Rates of Autism Due to Changing Diagnoses Classification of special Education Students
What is Autism and Why is Public Understanding Important?
How Katy Perry Has Had an Impact on Autism Awareness
5 Ordinary Fathering Skills that Connect you with your Autistic Son
Can-Do Attitude Fuels Pilates Teacher with Cerebral Palsy
Preemies Don’t Show Typical Signs of Autism in Early Infancy
Why Were Cases of Autism So Hard To Find Before the 1990’s?
Teen Model with Down Syndrome Lands First Ad Campaign
Shriver Center Studying Falls Prevention in People with Intellectual Disabilities
6 Autism Terms That Have Disappeared From the Textbooks