Welcome!

You're reading http://debacabhpclc10.blogspot.com/

This blog has been open since Monday, February 16th. I built it right after our last LC10 meeting.

Here's my original, welcoming post, from Feb. 16:

I got to thinking: maybe a blog would be more flexible than a conventional list serv, as each of us can post articles, as well as giving comments to posts.

And we can each decide whether or not we choose to receive email notification that new things are posted here, or just visit the blog at our own convenience.

In addition, we can post video, photos, audio and links here, to create an archive of available items of interest. We can go back more easily and access these, without going through fifty thousand old emails, since they'll be categorized, easy to access, by topic.

Please email me info about any calendar events you'd like me to post on the side bar.

Email me, so you can create content for this blog.

There will be a little, orange link, "Subscribe to: Posts(Atom) at the bottom of this blog, where you can sign up for email notifications of new posts and/or comments to posts.

I'm setting this up so that anybody can comment on posts. I'll approve comments. I won't edit them. Everybody will be allowed to comment who is active in any aspect of BHPC. Any spam, harassment by abusive strangers, etc. will be things I'll not approve as comments.

I STRONGLY advise that you DO NOT publish personally-identifying information about yourself (or others, without their knowledge and consent) in this blog! Dates of birth, phone numbers, Social Security numbers, addresses, children's personal info, etc. will all be visible to anybody on the 'web. Just keep it in mind.

If a meeting or event is to be held at a private home or property -- rather than our usual meeting places, just say, "John Doe's house," and request that people comment to the blog post, if they need directions.

Any thoughts, suggestions, available resources, etc. would be appreciated.

Also: I could sure use an accurate description of LC10 to place in the "About Me" section of this blog!

Thanks,

Rogi

"Brainstorm" airs tonight. Why's that important?

You're reading http://debacabhpclc10.blogspot.com/


Let me explain why this is so validating for me.

The show it airs on is called, "Arts and Ideas Radio." It's produced by Jay Allison.

Who's Jay Allison?

Ever listen to "This I Believe" on NPR on Sundays? That's Jay Allison.

Ever hear of Atlantic Public Media? That's Jay Allison.

Ever hear of WCAI & WNAN? Jay Allison is a founder of both stations.

Ever hear of http://transom.org (the FIRST website to ever win a Pulitzer)? That's Jay Allison.

Ever hear of http://prx.org ? That's Jay Allison.

Ever hear of "Nightline?" The real one, with Ted Koppel? That's Jay Allison.

You cut this guy, he bleeds documentaries and diodes.

He picked out "Brainstorm" from a SLEW of independently produced pieces (by people with far more experience, education, productions, connections and polish than I) over on PRX, where "Brainstorm" is listed.

Jay Allison picked something I produced to air on his show. He picked something I care about deeply, that affects me, personally, to air on his program.

http://www.jayallison.com/

I can't think of better validation, except that Paul Ingles has supported it -- and me -- enough to encourage me to offer it on PRX.

This is the biggest thing that's ever happened to me as a radio producer. It means I'm swimming in the deep end now.

http://debacabhpclc10.blogspot.com/2009/03/brainstorm-experience-of-brain-injury.html

--
Rogi Riverstone

Developmental Disabilities 'Net Resources

You're reading http://debacabhpclc10.blogspot.com/



DISABILITIES: DEVELOPMENTAL DISABILITIES: Centers for Disease Control and Prevention.
Developmental Disabilities: Topic Home
<http://www.cdc.gov/ncbddd/dd/default.htm>

Developmental disabilities are a diverse group of severe chronic
conditions that are due to mental and/or physical impairments. People with
developmental disabilities have problems with major life activities such
as language, mobility, learning, self-help, and independent living.
Developmental disabilities begin anytime during development up to 22 years
of age and usually last throughout a persons lifetime.

More
<http://www.cdc.gov/ncbddd/dd/dd1.htm>

Developmental Disabilities

Developmental disabilities are a diverse group of severe chronic
conditions that are due to mental and/or physical impairments. People with
developmental disabilities have problems with major life activities such
as language, mobility, learning, self-help, and independent living.
Developmental disabilities begin anytime during development up to 22 years
of age and usually last throughout a persons lifetime.

Developmental disabilities activities at CDC include:

Studying how common developmental disabilities are and who is more likely
to have them

Finding the causes of developmental disabilities and the factors that
increase the chance that a person will have one

Learning how people with developmental disabilities can improve the
quality of their lives.

CDCs activities focus on:

Autism spectrum disorders


Cerebral palsy


Hearing loss
<http://www.cdc.gov/ncbddd/dd/ddhi.htm>

Mental retardation
<http://www.cdc.gov/ncbddd/dd/ddmr.htm>

Vision impairment
<http://www.cdc.gov/ncbddd/dd/ddvi.htm>

Efforts to improve the health of people with developmental disabilities

People with disabilities can live healthy lives. There are many federal
and federally-funded programs that help people learn to live well with a
disability. CDC has put together a list of some of these programs,
including links to their Web sites so that you can learn more about them.
[Read about improving health]

Resources for people with developmental disabilities and their families

CDC does not study education or treatment programs for people with
developmental disabilities, nor does it provide direct services to people
with developmental disabilities or to their families. However, CDC has put
together a list of resources for people affected by developmental
disabilities. [Go to the resources list]

Developmental disabilities activities at other federal agencies

CDC is not the only federal agency that has developmental disability
activities. Click on the links below to learn about the activities at
other federal programs. Many of these sites have some information in
Spanish.

Administration on Developmental Disabilities (ADD)
<http://www.acf.dhhs.gov/programs/add/>

ADD works to ensure that people with developmental disabilities and their
families help decide what services they should get and that they indeed
get the support and services they need. Service areas include education,
employment, health, child care, housing, protection and advocacy,
recreation, transportation, and quality assurance. ADD is part of the
Administration for Children and Families.

Center for Medicaid and Medicare Services (CMS)


CMS has two programs, Medicaid and the State Childrens Health Insurance
Program, that can help children and adults with disabilities get health
care coverage.

DisabilityInfo.gov
<http://www.disabilityinfo.gov/>

DisabilityInfo.gov has information about disabilities resources in the
federal government. Topics include jobs, education, housing,
transportation, health, income support, technology, community life, and
civil rights.

Maternal and Child Health Bureau (MCHB)
<http://mchb.hrsa.gov/>

MCHB promotes the health of children and mothers. It has programs in areas
such as children with special health care needs, newborn hearing
screening, child health and safety, and genetics. MCHB is part of the
Health Resources and Services Administration.

MEDLINEplus Health Information, National Library of Medicine
<http://www.nlm.nih.gov/medlineplus/>

MEDLINEplus, an online service of the National Library of Medicine, links
people to information about topics such as autism, cerebral palsy, hearing
loss, mental retardation, and vision impairment.

National Council on Disability (NCD)
<http://www.ncd.gov/>

NCD ensures that people with disabilities have the same opportunities as
people who do not have disabilities. It promotes policies and programs
that help people with disabilities live on their own, support themselves,
and take part in all aspects of society. NCD makes recommendations to the
President and Congress on issues that affect Americans with disabilities.

National Institutes of Health (NIH)
<http://www.nih.gov/>

Several institutes within NIH conduct and fund research about
developmental disabilities. They also offer information to the public and
educational programs for health professionals.

National Eye Institute (NEI)
<http://www.nei.nih.gov/>

NEI studies ways to prevent and treat eye diseases and vision problems and
to improve the lives of people with these conditions.

National Institute of Child Health and Human Development (NICHD)
<http://www.nih.gov/nichd/>

NICHD studies the impact that disabilities such as autism and mental
retardation have on peoples lives, as well as possible causes and
treatments of those disabilities.

National Institute on Deafness and Other Communication Disorders (NIDCD)
<http://www.nih.gov/nidcd/>

NIDCD studies hearing loss, deafness, and problems with speech and
language.

National Institute of Mental Health (NIMH)
<http://www.nimh.nih.gov/>

NIMH studies mental illness and behavior problems, including such
conditions as autism, attention deficit hyperactivity disorder, and
learning disabilities.

National Institute of Neurological Disorders and Stroke (NINDS)
<http://www.ninds.nih.gov/>

NINDS studies the causes, diagnosis, treatment, and prevention of brain
and nervous system disorders such as cerebral palsy and epilepsy.

National Institute on Disability and Rehabilitation Research (NIDRR)
<http://www.ed.gov/about/offices/list/osers/nidrr/index.html>

NIDRR promotes the participation of all people with disabilities in their
communities. It also helps communities provide opportunities and support
for people with disabilities. NIDRR focuses on studies related to topics
such as jobs, health, assistive technology, and independent living. NIDRR
is part of the U.S. Department of Education.

Office of Disability Employment
<http://www.dol.gov/odep/welcome.html>

The Office of Disability Employment works to increase job opportunities
for people with disabilities. It promotes access to education, training,
assistive technology and other support so that people with disabilities
can get and keep jobs. It helps businesses increase the number of work
options for people with disabilities. The Office of Disability Employment
is part of the U.S. Department of Labor.

Office of Special Education Programs (OSEP)
<http://www.ed.gov/about/offices/list/osers/osep/index.html>

OSEP works to improve the lives of children and youth with disabilities
from birth to age 21 through education and support services. OSEP
administers the Individuals with Disabilities Act (IDEA), the federal law
that supports special education and related services for children and
youth with disabilities. OSEP is part of the U.S. Department of Education.

Office on Disability
<http://www.hhs.gov/od/>

The Office on Disability oversees the implementation of federal disability
policies and programs. It works to remove barriers facing people with
disabilities so they can participate more fully in their communities. It
also fosters interactions between the U.S. Department of Health and Human
Services (of which it is a part), other federal agencies, state agencies,
local agencies, and private sector groups.

Rehabilitative Services Administration (RSA)
<http://www.ed.gov/about/offices/list/osers/rsa/index.html>

RSA helps people with disabilities get jobs and live more independently.
RSA is part of the U.S. Department of Education.

Additional Information Sources from This Website
<http://www.cdc.gov/ncbddd/dd/default.htm>
Monitoring Developmental Disabilities
Research about Developmental Disabilities
Prevention of Developmental Disabilities
Educational Materials
Developmental Disability Data Sets

DISABILITIES: DEVELOPMENTAL DISABILITIES:
National Center on Birth Defects and Developmental Disabilities (NCBDDD)

National Center on Birth Defects and Developmental Disabilities (NCBDDD)
Centers for Disease Control and Prevention
1600 Clifton Rd, Atlanta, GA 30333, U.S.A
Public Inquiries: 1-800-CDC-INFO (232-4636);
1-888-232-6348 (TTY)
24 Hours / Every Day -
cdcinfo@cdc.gov
<http://www.cdc.gov/ncbddd/>

Mission
The National Center on Birth Defects and Developmental Disabilities (NCBDDD)
promotes the health of babies, children, and adults, and enhances the
potential for full, productive living.

Our work includes identifying the causes of and preventing birth defects
and developmental disabilities, helping children to develop and reach
their full potential, and promoting health and well-being among people of
all ages with disabilities

Specific Topics

Birth Defects
Basic Facts
Prevention of Birth Defects
Folic Acid Helps Prevent Some Birth Defects
Preconception Care
Having a Healthy Pregnancy
Fetal Alcohol Syndrome - Preventing Alcohol Exposed Pregnancies
Lymphocytic Choriomeningitis Virus (LCMV) and Pregnancy
Diabetes and Pregnancy
Medication Use During Pregnancy and Breastfeeding
Genetics
Monitoring Birth Defects
Research
Developmental Disabilities
Autism Spectrum Disorders
Autism Information Center
Cerebral Palsy
Hearing Loss
Kernicterus
Mental Retardation / Intellectual Disability
Vision Impairment
Blood Disorders
Bleeding Disorders
Clotting Disorders - Thrombophilia
Thalassemia
Sickle Cell Disease
For Women
Surveillance
Laboratory Research
Hemochromatosis
Human Development
Attention-Deficit / Hyperactivity Disorder
Child Development
Disability and Health
Single Gene Disorders
- Duchenne/Becker Muscular Dystrophy
- Fragile X Syndrome
Early Hearing Detection and Intervention
Tourette's Syndrome
Women with Disabilities

Birth Defects

Birth Defects Home > Basic Facts

Basic Facts About Birth Defects
<http://www.cdc.gov/ncbddd/bd/facts.htm>

Frequently Asked Questions

What is a birth defect? Which are most common? Learn answers to these and
other frequently asked questions listed below...

What is a birth defect?
What are the most common birth defects?
What is my chance of having a baby with a birth defect?
Do genetic factors play a role in causing birth defects?
What causes birth defects?
Does alcohol cause birth defects?
Does smoking cause birth defects?
Do illegal drugs cause birth defects?
Does exposure to the MMR vaccine cause birth defects? Other vaccines?
When in pregnancy do birth defects happen?
What can I do to keep germs from harming my baby and me?
What kind of health care provider can help find out what caused my babys
birth defect?
Who coordinates the health care of my child who has a birth defect?
What does a genetic counselor do?
Where can I find a clinical geneticist or genetic counselor?
Where can I get information about my baby's birth defect?
How can I get in touch with parents of a child with the same birth defect
as my child?
What should I do to have a healthy pregnancy?
What is CDC doing to prevent and help find the causes for birth defects?

Birth Defects

Birth Defects Home > Basic Facts > FAQs

Birth Defects: Frequently Asked Questions (FAQs)
<http://www.cdc.gov/ncbddd/bd/faq1.htm#Whatisabirthdefect>

Q: What is a birth defect?

A birth defect is a problem that happens while the baby is developing in
the mothers body. Most birth defects happen during the first 3 months of
pregnancy.

A birth defect may affect how the body looks, works, or both. It can be
found before birth, at birth, or anytime after birth. Most defects are
found within the first year of life. Some birth defects (such as cleft
lip or clubfoot) are easy to see, but others (such as heart defects or
hearing loss) are found using special tests (such as x-rays, CAT scans, or
hearing tests). Birth defects can vary from mild to severe.

Some birth defects can cause the baby to die. Babies with birth defects
may need surgery or other medical treatments, but, if they receive the
help they need, these babies often lead full lives.

Q: What are the most common birth defects?

One of every 33 babies is born with a birth defect. A birth defect can
affect almost any part of the body. The well being of the child depends
mostly on which organ or body part is involved and how much it is
affected.

Many birth defects affect the heart. About 1 in every 100 to 200 babies
is born with a heart defect. Heart defects make up about one-third to
one-fourth of all birth defects. Some of these heart defects can be
serious, and a few are very severe. In some places of the world, heart
defects cause half of all deaths from birth defects in children less than
1 year of age.

Other common birth defects are neural tube defects, which are defects of
the spine (spina bifida) and brain (anencephaly). They affect about 1 of
1,000 pregnancies. These defects can be serious and are often life
threatening. They happen less often than heart defects, but they cause
many fetal and infant deaths.

Birth defects of the lip and roof of the mouth are also common. These
birth defects, known as orofacial clefts, include cleft lip, cleft palate,
and combined cleft lip and cleft palate. Cleft lip is more common than
cleft palate. In many places of the world, orofacial clefts affect about
1 in 700 to 1,000 babies.

Some birth defects are common but rarely life threatening, though they
often require medical and surgical attention. Hypospadias, for example,
is a fairly common defect found in male babies. In babies with
hypospadias, the opening of the urethra (where urine comes out) is not at
the tip of the penis but on the underside. Treatment depends on how far
away from the tip the opening is and can involve complex surgery. This
defect is rarely as serious as the others listed above, but it can cause
great concern and sometimes has high medical costs. It rarely causes
death.

These are only some of the most common birth defects. Two final points
are worth noting. First, genetic conditions, though not mentioned so far,
also occur often. Down syndrome, for example, is a genetic condition that
affects about 1 in 800 babies, but it affects many more babies who are
born to older women. Second, a woman who is pregnant may miscarry a baby
(fetus) early, before it is time for the baby to be born. This often
happens when the fetus has a severe birth defect. To know the true impact
of birth defects and how often they occur, we not only need to look at
babies born but also, if possible, look at all pregnancies.

Q: What is my chance of having a baby with a birth defect?

In the United States, about 3% of babies are born with birth defects.
Some women have a higher chance of having a child with a birth defect.
Women over the age of 35 years have a higher chance of having a child with
Down syndrome than women who are younger. If taken when a woman is
pregnant, certain drugs can increase the chance of birth defects. Also,
women who smoke and use alcohol while pregnant have a higher risk of
having a baby with certain birth defects. Other women have a higher
chance of having a baby with a birth defect because someone in their
family had a similar birth defect. To learn more about your risk of
having a baby with a birth defect, you can talk with a genetic counselor.
(To find a genetic counselor, see Where can I find a geneticist or genetic
counselor?) Also, to reduce your chances of having a baby with a birth
defect, talk with your health care provider about any medicines that you
take, do not drink alcohol or smoke, and be sure to take 400 micrograms of
the B vitamin folic acid every day. It is the amount of folic acid found
in most multivitamins.

Q: Do genetic factors play a role in causing birth defects?

Yes, in some but not all cases. Changes in the genes can cause certain
birth defects in infants. Genes tell each cell in the body how to combine
with other cells to form parts of the body. For example, genes tell
certain cells to make the heart, the kidneys, or the brain, and they tell
other cells to make our physical features, like green eyes or brown hair.
Genes also tell the cells how to work in the body. Genes give instructions
for cells in our heart to beat, our stomach to digest food, our muscles to
push and pull, and our brain to think.

Genes combine with many other genes to make chromosomes. Changes in single
genes, groups of genes, or entire chromosomes can sometimes cause birth
defects. These genetic changes might happen only in the infant, or they
might pass down from one or both parents. Sometimes, there are other
relatives in the family with the same birth defect, but not always.

Factors other than genetics can also increase the chance of having a baby
with a birth defect. (See Does alcohol cause birth defects? Does smoking
cause birth defects? Do illegal drugs cause birth defects?). In some
cases, the mother or baby has genes that are easily affected by factors
outside the body that cause birth defects. In this case, genes and
environment work together to cause a birth defect.

Medline Plus: Developmental Disabilities
U.S. National Library of Medicine
8600 Rockville Pike, Bethesda, MD
20894
National Institutes of Health
Department of Health & Human Services
<http://www.nlm.nih.gov/medlineplus/developmentaldisabilities.html>

Developmental Disabilities

Developmental disabilities are birth defects that cause lifelong problems
with how a body part or system works. They include

Nervous system disabilities affecting how the brain, spinal cord and
nervous system function. They cause mental retardation, including Down
syndrome and fragile X syndrome. They also cause learning and behavioral
disorders, such as autism

Sensory-related disabilities, which can cause vision, hearing and sight
problems

Metabolic disorders such as phenylketonuria, which affect how your body
processes the materials it needs to function

Degenerative disorders such as Rett syndrome, which might only become
apparent when children are older and can cause physical and mental
problems

Most developmental disabilities have no cure, but you can often treat the
symptoms. Physical, speech and occupational therapy might help. Special
education classes and psychological counseling can also help.

National Institute of Child Health and Human Development

Related Topics

Autism
Disabilities
Down Syndrome
Fetal Alcohol Syndrome
Learning Disorders
Children and Teenagers
Mental Health and Behavior

National Institutes of Health

The primary NIH organization for research on Developmental Disabilities is
the National Institute of Neurological Disorders and Stroke

Website Contents

Overviews

Developmental Disabilities(American Psychiatric Association)

Developmental Disabilities - An Overview(American Academy of Pediatrics)

Latest News

Gene Mutation Tied to Majority of Cases of Mental Retardation(02/04/2009,
HealthDay)

Prevention/Screening

Child Development: Developmental Screening(Centers for Disease Control and
Prevention)

Newborn Screening Tests(March of Dimes Birth Defects Foundation)
Also available in Spanish

Coping

Mental Retardation: Learning How to Help Your Child(American Academy of
Family Physicians)
Also available in Spanish

Mental Retardation: What Caregivers Need to Know(American Academy of
Family Physicians)
Also available in Spanish

Specific Conditions

Angelman Syndrome(National Institute of Neurological Disorders and Stroke)
- Short Summary

Developmental Dyspraxia(National Institute of Neurological Disorders and
Stroke)

Intellectual Disability(Centers for Disease Control and Prevention)

Intellectual Disability (formerly Mental Retardation)(National

Dissemination Center for Children with Disabilities)

Multisystem Developmental Disorder(Developmental Behavioral Pediatrics
Online)

Williams Syndrome(National Institute of Neurological Disorders and Stroke)

Related Issues

Dental Care Every Day: A Caregiver's Guide(National Institute of Dental
and Craniofacial Research)

Individualized Education Plans (IEPs)(Nemours Foundation)

Occupational Therapy(Nemours Foundation)

Partnering with Your Child's School: A Guide for Parents(HSC Foundation) -
Links to PDF
Also available in Spanish

Physical Therapy(Nemours Foundation)

Sexuality and Intellectual Disability(American Association on Intellectual
and Developmental Disabilities)

Speech-Language Therapy(Nemours Foundation)

What Is a Developmental-Behavioral Pediatrician?(American Academy of
Pediatrics) - Links to PDF

Videos

Baby Steps: Learn the Signs. Act Early(Centers for Disease Control and
Prevention)

Clinical Trials

ClinicalTrials.gov: Developmental Disabilities(National Institutes of
Health)

ClinicalTrials.gov: Mental Retardation(National Institutes of Health)

Genetics

Genetics Home Reference: 1p36 deletion syndrome(National Library of
Medicine)

Genetics Home Reference: Allan-Herndon-Dudley syndrome(National Library of
Medicine)

Genetics Home Reference: Angelman syndrome(National Library of Medicine)

Genetics Home Reference: Aspartylglucosaminuria(National Library of
Medicine)

Genetics Home Reference: Coffin-Lowry syndrome(National Library of
Medicine)

Genetics Home Reference: Cornelia de Lange syndrome(National Library of
Medicine)

Genetics Home Reference: Costello syndrome(National Library of Medicine)

Genetics Home Reference: Cri-du-chat syndrome(National Library of
Medicine)

Genetics Home Reference: Emanuel syndrome(National Library of Medicine)

Genetics Home Reference: FG syndrome(National Library of Medicine)

Genetics Home Reference: Mowat-Wilson syndrome(National Library of
Medicine)

Genetics Home Reference: Rubinstein-Taybi syndrome(National Library of
Medicine)

Genetics Home Reference: Smith-Lemli-Opitz syndrome(National Library of
Medicine)

Genetics Home Reference: Smith-Magenis syndrome(National Library of
Medicine)

Genetics Home Reference: Williams syndrome(National Library of Medicine)

Genetics Home Reference: Wolf-Hirschhorn syndrome(National Library of
Medicine)

Research

Birth Defects and Developmental Disabilities(National Institute of Child

Health and Human Development)

Mental Retardation(National Institutes of Health) - Links to PDF

Journal Articles

References and abstracts from MEDLINE/PubMed (National Library of
Medicine)

Article: MAP'ing CNS development and cognition: an ERKsome process.

Article: Parenting behavior is associated with the early neurobehavioral
development of...

Article: Neuropsychological performance 10 years after immunization in
infancy with thimerosal-containing...

Developmental Disabilities -- see more articles

Mental retardation -- see more articles

Dictionaries/Glossaries

Kids' Quest on Disability and Health: Glossary(Centers for Disease Control
and Prevention)

Directories

State Councils on Developmental Disabilities(Administration on
Developmental Disabilities)
State Resources (Disability-Related)(National Dissemination Center for
Children with Disabilities)

Organizations

Administration on Developmental Disabilities
National Center on Birth Defects and Developmental Disabilities(Centers
for Disease Control and Prevention)
Also available in Spanish
National Dissemination Center for Children with Disabilities
National Institute of Neurological Disorders and Stroke
Also available in Spanish

Law and Policy

Americans with Disabilities Act - ADA Home Page(Dept. of Justice)
Categories of Disability under IDEA Law(National Dissemination Center for
Children with Disabilities)
Also available in Spanish
Services in School for Children with Special Needs: What Parents Need to
Know(American Academy of Child and Adolescent Psychiatry)

Statistics

Disability Characteristics(Bureau of the Census)

Children

Coping with Disaster: Suggestions for Helping Children with Cognitive
Disabilities(Administration for Children and Families)
Kids' Quest on Disability and Health(Centers for Disease Control and
Prevention)
Mental Retardation(Nemours Foundation)

Seniors

Mental Retardation(AGS Foundation for Health in Aging)
Older Adults and Their Aging Caregivers(American Association on
Intellectual and Developmental Disabilities)

DISABILITIES: DEVELOPMENTAL DISABILITIES :
CHILDREN: DISABILITIES AND SPECIAL NEEDS:
Eunice Kennedy Shriver.
National Institute of Child Health and Human Development.
National Institutes of Health.
Developmental Disabilities

Eunice Kennedy Shriver.
National Institute of Child Health and Human Development.
National Institutes of Health.
Developmental Disabilities
<http://www.nichd.nih.gov/health/topics/developmental_disabilities.cfm>

Developmental Disabilities

What are developmental disabilities?

Developmental disabilities are birth defects related to a problem with how
a body part or body system works. They may also be known as functional
birth defects. Many of these conditions affect multiple body parts or
systems.

What are the different types of developmental disabilities?

Nervous system disabilities

These are birth defects that affect the functioning of the brain, spinal
cord, and nervous system, which can impact intelligence and learning.
These conditions can also cause problems such as behavioral disorders,
speech or language difficulties, convulsions, and movement disorders.
Some of the common nervous system disabilities include:

Mental retardation - The term mental retardation describes a certain range
of scores on an IQ (intelligence quotient) test. Mental retardation can
result from a number of different conditions, including (but not limited
to):

Down syndrome - a set of mental and physical characteristics related to
having an extra copy of Chromosome 21.

Fragile X syndrome- the most common inherited form of mental retardation
caused by a defect in a specific part of the Fragile X Mental
Retardation-1 gene that causes the body to produce low amounts or none of
a certain protein. Without the protein, the brain doesnt develop
normally.

Autism Spectrum Disorders - a range of problems that can affect a person's
communication skills, social skills, and intelligence. Because autism is
diagnosed on a spectrum, people with this condition can have mild symptoms
or severe symptoms; but they all have a type of autism.
Sensory-related disabilities Sensory-related problems are often a key part
of complex birth defect patterns. For instance:

Children with congenital rubella are likely to be deaf, and to develop
cataracts of the eyes.

Children with Williams syndrome have trouble seeing spatial relationships
between objects around them.

Those with Fragile X syndrome are often very sensitive to loud noises;
they may overreact or have outbursts in reaction to such sounds.

Metabolic Disorders

This group of functional birth defects affects a person's metabolism,
which is the way the body builds up, breaks down, and otherwise processes
the materials it needs to function. For example, how your body breaks down
sugar to create energy is a metabolic process. Two commonly known
metabolic disorders include:

Phenylketonuria (PKU) - a condition in which a problem with a specific
enzyme, a protein that speeds up certain chemical reactions, causes mental
retardation.

Hypothyroidism - a hormonal condition that, if left untreated in an
infant, can cause mental retardation.

Degenerative Disorders

Some infants born with degenerative disorders appear normal at birth, but
then lose abilities or functions due to the in condition. In these cases,
the defect is usually not detected until an older age, when the child or
person starts to show signs of loss of function. Some degenerative
disorders are the result of metabolic disorders.

Degenerative disorders can cause physical, mental, and sensory problems,
depending on the specific defect. Rett syndrome is an example of a
degenerative birth defect. This disorder, which usually affects girls, is
most often caused by a specific genetic abnormality.

What are the treatments for developmental disabilities?

Many developmental disabilities have no cure, but there are often ways to
treat the symptoms. For example:

Children with Down syndrome can often benefit from speech therapy,
occupational therapy, and exercises for gross and fine motor skills. They
might also be helped by special education and attention at school.
Surgery can also help correct heart defects.

People with Fragile X syndrome can get help to reduce or eliminate some of
the learning, physical, social and emotional, speech and language, and
sensory problems common in Fragile X. The sooner those with Fragile X get
help, the more they can learn and the better their outcomes.

There are a variety of treatment options to help with the symptoms of
autism spectrum disorders. This may include behavioral, occupational,
physical, and speech-language therapy. In addition, educational
specialists can help guide the childs school experiences.
Girls with Rett syndrome can be treated for some of the problems
associated with the condition. These treatments generally aim to slow the
loss of abilities, improve or preserve movement, and encourage
communication and social contact. Treatments may include help from
physical therapists, occupational therapists, and speech-language
therapists. Other options, such as medication or surgery are also
effective for treating some of the symptoms of Rett syndrome.
Treatment for hypothyroidism, or underactive thyroid, includes daily oral
hormone treatment.

The most effective treatment for PKU is a special diet that carefully
limits the protein phenylalanine (Phe). People with PKU who are on this
diet from birth or shortly thereafter develop normally and usually have no
symptoms of PKU.

Where can I get more information on developmental disabilities?

Facts about Down syndrome
Autism Overview: What We Know
Families and Fragile X Syndrome
Rett Syndrome

March Agenda, Feb. Minutes

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De Baca Local Collaborative Meeting

Monday, March 16, 2009

12:00pm 

Agenda 
 12:00pm Welcome & Introductions 
12:05pm Minutes from February 16, 2009 meeting 
12:10pm Old Business
Telemedicine & Crisis Intervention Training Update
Legislative Priorities
Letter of Readiness/LC 10 Functioning
12:40pm New Business
ENMU Bridging for Meetings
12:50pm Other
BHPC Update
CAT Update
1:00pm Meeting Adjournment 

=====================

Feb. Minutes

De Baca local Collaborative Meeting

Monday, February 16, 2009
12:00pm
Courthouse Annex Meeting Room 

Members present were Jesse Chavez, CAT Team; Loretta Turnbow, MHR; Paul Gauna, Mary Ryan, Lee Ann Weber, Clora Hamon, Kathy Mickle, Marsha Webb, Rogi, Brenda Yarbrough, Family Member/BHPC; Zack Yarbrough, Hailey Crocker, Amanda Crocker, Emory Crawford, Consortium; Gail Hinderliter, Consortium; Bill Martin, ENMU, Gloria Salas, Lisa Walraven, LC 10 Coordinator, Cheryl Butterfield, De Baca Health Council (12:45pm) and Marcia Prophet, HSD (1:00pm).  

Emory Crawford called the meeting order with introductions.  

The minutes from the January 23, 2009 meeting were reviewed. Brenda Yarbrough moved to accept the minutes. Loretta Turnbow seconded. Motion passed. 

Old Business- 

Local Collaborative Assessment Tool- Jesse Chavez stated that this item would be tabled as Marcia Prophet is not at the meeting. 

Telemedicine/Crisis Intervention Training- Telemedicine-Brenda reported that she sent the letter to the De Baca Family Practice Clinic with LC 10 input for telemedicine. Emory will follow up with Dusti Scoffield. Crisis Intervention-Lisa reported that Alida is working to get the Crisis Intervention training in Fort Sumner, but must have 15-20 participants for the four hour free training. Alida will be talking to the mayor and EMS in Fort Sumner. If not enough responders would have to travel to Quay County. Alida is looking toward middle of March for training. Emory added that training is expensive and often hard for first responders to get out of town to attend trainings.  

Crisis Fund Update- It was reported that we are waiting to hear from other counties. Rogi still willing to look for grants if there is a possibility of funding for transportation for her. 

Legislative Priorities- Jesse reported process for the Legislative priorities would be sent out in March. One person would be responsible for inputting data. 

New Business- 

February Core Group- Jesse reported that it discovered this morning that all county chairs will be in attendance at the Regional Drug and Alcohol Substance (Consortium) on the same date as the February core meeting. The county chairs are all sit on the board for the Consortium. Harding and Quay counties were polled and both are okay with cancelling the February LC 10 Core group meeting. Brenda addressed that she has concerns with providers being the chairs for local collaboratives. Rogi feels monthly meetings are important, adding rural areas have important feedback to get to State level. She said consumers have different feedback from professionals. Rogi added communication is important and would be willing work on a list serve, like yahoo and create a blog, need e-mail addresses needed for list serve. Lisa reported that she only blind carbon copies e-mails due to some had asked to be private. She will send out to group to see who wants public or private mail. Rogi added she had sent a letter out that she wanted to go to group and it was not done. Lisa reported that Jesse said to go through county chairs and had not received response from Emory. It was decided no need for meeting by group in February. Rogi will work on blog and Lisa will find out who wants addresses public. 

Letter of Readiness/LC 10 Functioning- Jesse reported that according to letter of readiness each county had one vote. No consumer involvement at first and now there is more involvement by consumers. He reported collaboratives need to review the letter of readiness and think about by-laws. He added that most collaboratives piggybacked of health councils at first. There was round table discussion that the letter was to redesign the way behavioral health was viewed. Emory suggested that Brenda and Rogi be on a subcommittee with the other counties to work on by-laws and consumer attendance and involvement. Brenda feels stipends will help get consumers at meetings. Emory added possibly helping with recruitment in other counties. Lisa will check with Quay County to see if the need help in flyers, etc. for their monthly meeting. Emory suggested adding this item to the agenda for the next core group meeting. 

Health Fair/Promotional Items-Amanda Crocker asked when the Health Fair is. Cheryl Butterfield reported that it will be held on March 27, 2009 from 8:00am-1:00pm at the PIT. Lisa said that she would like to order first responder tip sheets to hand out at the LC 10 booth. The group agreed to the tip sheets for the Health Fair. Brenda asked about Amanda helping at the booth again. Rogi moved that Amanda help at the booth for $10 per hour. Kathy seconded. Motion passed. 

Other-

BHPC Update- Brenda reported the BHPC will meet next Wednesday. The subcommittees did not send out updates. 

CAT Update- Jesse advised that updates regarding Legislative priorities were addressed earlier.

Rogi addressed that she has concerns over community treatment by the library and grocery store. She has trouble dealing with loud noises and being yelled at due to post traumatic stress disorder. Rogi said the BH council should be the place for tolerance and acceptance. She feels that people often afraid because they don’t understand. Rogi addressed that she does not want to see people stigmatized by public officials due to gender identity issues and those that are not heterosexual. These people have the right to same care as all others in society. She would like to research workshops, etc about tolerance, reducing fear and hostility. Brenda asked if Marcia Prophet could get a copy of the Anti-stigma information to Rogi. She asked Emory about including this with Telemedicine. Rogi says she feels that she has been living in a closet and must be true to herself. Brenda says she supports and suggested getting with Marcia for anti-stigma information. 

Marcia Prophet passed out the consumer assessment tool, reporting that is a 40 question survey to find out what people know about behavioral health collaboratives. This is part of a grant mandate to help local collaboratives. They would like to come twice a year to do assessment and report back quarterly to report progress and see where challenges are. Brenda asked about the results of the last assessment. Marcia responded that there were not adequate enough numbers to make sense for data. They are trying to reorganize after losing personnel.  

Meeting adjourned at 1:30pm 
Minutes taken by-
Lisa Walraven
LC 10 Coordinator

Why Don’t We Fight?

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Why Don’t We Fight?

An Answer to the Behavioral Health Planning Council LC10

By Rogi

"The only thing we have to fear is fear, itself."

-- F. Roosevelt

At a past  meeting, a question was posed: “Why don’t we fight?” We do fight; that’s why we’re here. We are fighting the exploitation, abuse, stereotyping and neglect of people with behavioral health issues.

It angers us that people whom Jesus might have called, “the least of these,” are so poorly treated and stigmatized in our culture. We are advocating on behalf of citizens with behavioral health issues, and advising the State of New Mexico with our recommendations for how their challenges and needs may be met.

Anger is a great motivator for change. It is a primal emotion and very dangerous, if not released in a disciplined and constructive manner. Anger is triggered by fear. We are afraid that, if someone doesn’t do something, behavioral health issues will never be healed and might, quite possibly, be worsened. We felt somebody ought to do something, and we thought it could be us.

Many behavioral health challenges stem directly from fear.

As Dr. Martin Luther King, Jr. said, “Normal fear protects us; abnormal fear paralyses us. Normal fear motivates us to improve our individual and collective welfare; abnormal fear constantly poisons and distorts our inner lives. Our problem is not to be rid of fear but, rather to harness and master it.”

By that definition, our whole culture suffers from behavioral health issues, as it is toxic with abnormal fears.


Substance abuse begins as an attempt to self-medicate fear and anger. It then progresses into a physiological and neurological addiction. Most people don’t begin abusing substances with a goal of slow suicide by addiction; they’re usually trying to numb themselves to powerful emotions. Fear and anger are usually the strongest of these.

People with organic, psychiatric disorders are continually plagued by fear and anger, as are the developmentally disabled and those with other neurological disorders, such as trauma. They’re afraid someone will find out they have “mental disability” and either: shun, ridicule, persecute, exile or torment them for a condition they never chose. Our culture fears them, although most are harmless, no matter how unconventional their behaviors, appearance or thoughts might seem.

People with behavioral health issues are probably the least able to productively deal with fear. Altered mental states make rational thought difficult, at best. Impulse control isn’t even an option, for some. Many who could constructively control impulses and channel anger into positive action have been so dismissed and ostracized from our communities that they’ve never been taught they have the option. They just don’t know any better.

Those of us who struggle with behavioral health issues, and who love, care and work for them, don’t need any more exposure to irrational fear and anger. Our lives are riddled with them. For some of us, it’s all we can do to shelter ourselves and our loved ones from fear and anger. We need peace. We need hope. We need constructive outlets. We need to seek out the root causes and conditions from which fear and anger spring and heal ourselves and our community.

We can’t heal rage, terror and violence by using the same tactics. .We have got to restrain our impulses to act out irrationally when we feel fear or anger. It’s healthier for the mental equilibrium of ourselves, our loved ones, our clients and our society.

As Gandhi said, “"An eye for an eye makes the whole world blind."

Hey, South Africa!

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I see you, visiting this blog! Leave a comment! Say hello!

Rogi

Accessible Internet

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Accessibility and Learning Theories
By Martyn Cooper.
"...The paper seeks to review the interrelation between accessibility and
learning theory as it relates to eLearning. Here I give some key points from
the paper for comment if you wish..."
http://tinyurl.com/coo3vk

IMS AccessForAll Meta-data Specification
By Inovation Adoption Learning (ISM) Consortium.
"The AccessForAll Meta-data specification is intended to make it possible to
identify resources that match a user's stated preferences or needs. These
preferences or needs would be declared using the IMS Learner Information
Package Accessibility for LIP specification. The needs and preferences
addressed include the need or preference for alternative presentations of
resources, alternative methods of controlling resources, alternative
equivalents to the resources themselves and enhancements or supports required
by the user. The specification provides a common language for identifying and
describing the primary or default resource and equivalent alternatives for that
resource..."
http://www.imsglobal.org/accessibility/

Captioning Video with 'World Caption'
By University of Wisconsin.
"World Caption is a program for adding captions to a QuickTime compatible
video, using a transcript of that video. While World Caption cannot be used to
generate a transcript, it makes the process of synchronizing a transcript to
video simple, and allows quick and easy generation of captions."
http://kb.wisc.edu/helpdesk/page.php?id=6525

No Fuss Accessibility
By Antonio DaSilva.
"This article describes how you can quickly and easily create documents with
enhanced accessibility options for vision-impaired users using Microsoft Word
and Adobe Acrobat..."
http://www.writersua.com/articles/accessibility/index.html

Alt-erations
By Markku (Mark) Hakkinen.
"The section on the alt attribute in the current HTML5 working draft that
begins with 'What an img element represents depends on the src attribute and
the alt attribute' really seems to miss the point. This is the semantic Web
era, correct? Isn't the conditional logic of the current draft really trying
to affix a meaning or purpose to an image in all the wrong ways? Ambiguity is
not the way..."
http://www.talkinginterfaces.org/2009/03/06/alt-erations/

Connection
By William Loughborough.
"...Are people who provide materials for the Web, but ignore the 'everyone'
part ('after all, I'm not writing this for blind people') bigots, or just
uninformed, but well-meaning?..."
http://william-loughborough.blogspot.com/2009/03/connection.html

Does Your Grandfather Surf the Web?
By William Loughborough.
"...Dismissing old folks as pitiful fools is a poor plan for the continued
growth towards universal connection."
http://www.boobam.org/webgeezermild.htm

Web Accessibility as a Political Movement
By David Baron.
"...I think the attitude that evil Web authors need to be forced to care about
accessibility leads to technically worse solutions that require more work for
authors and leave the Web less accessible to disabled users as a result..."
http://dbaron.org/log/20090311-accessibility

Web Accessibility as a Political Movement IRC Discussion
By Karl Dubost and others.
"hmmm not sure I 100% agree with david..."
http://krijnhoetmer.nl/irc-logs/html-wg/20090312#l-67

Is Web Accessibility a Human Rights Issue?
By Wendy Chisholm.
"It's important for us to recognize each other's concerns. On the one hand we
have technologists who want to create things to help make the world better?help
people communicate more richly and quickly, to create technologies for
self-expression and commerce. Rock on. We want you to innovate because you're
changing the world. On the other hand we have people who want to use the
technologies and to participate in society. When the technologists say, 'Don't
make me think about accessibility, I want to be innovative.' The response from
people with disabilities can be hostile because the message from the
technologists is, 'I do not value you enough to include you in my innovation.'"
http://sp1ral.com/2009/03/is-web-accessibility-a-human-rights-issue/


The Electronic Curb-Cut Effect
By Steve Jacobs.
"Unusual things happen when products are designed to be accessible by people
with disabilities..."
http://www.icdri.org/technology/ecceff

Understanding the Effects of Cognitive Disorders: Parts 1 -3
By Kyle Lamson.
"On the baseline, cognitive disorders are about the brain and problems
understanding things. So there is no easy fix like slapping an alt attribute in
code, increasing color contrast and we will not understand something whether
written or read in a screenreader, using flexible widths where the content
paragraphs are to long can even cause more trouble for us even though free
flexing sizes are considered accessible..."
http://tinyurl.com/ba6xg7
http://tinyurl.com/bkrpt2
http://tinyurl.com/amevlg