What is NDRN? To quote from the website for NDRN:
"The National Disability Rights Network (NDRN) is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and the Client Assistance Programs (CAP) for individuals with disabilities. Through training and technical assistance, legal support, and legislative advocacy, NDRN works to create a society in which people with disabilities are afforded equality of opportunity and are able to fully participate by exercising choice and self-determination.
WHO WE SERVE
NDRN members serve individuals with a wide range of disabilities – including, but not limited to, those with cognitive, mental, sensory, and physical disabilities.
WHAT WE DO
NDRN members investigate reports of abuse and neglect, and seek systemic change to prevent further incidents; advocate for basic rights; and ensure accountability in health care, education, employment, housing, transportation, and within the juvenile and criminal justice systems for individuals with disabilities."
Issues that are addressed by NDRN include:
Abuse and Neglect
Assistive Technology
Community Integration
Criminal Justice
Disaster Management
Education
Employment
Housing
Juvenile Justice
Medicare / Medicaid
Mental Health
Traumatic Brain Injury (TBI)
Vocational Rehabilitation
Voting
If you or a loved one has a disability, this site is worth a look. They include stories about current disability rights cases in the courts. They also include information about TASC (The Training and Advocacy Support Center).
There are some interesting publications about the lack of workplace opportunities with fair wages for the disabled and the issue of restraint and seclusion in school
To visit the website for The National Disability Rights Network, copy and paste this URL:
http://www.napas.org
Thursday, June 9, 2011
Potomac Community Resources Serves Teens and Adults
In Montgomery County, MD, there is an organization that began in 1994, and now serves hundreds of teens and adults with developmental differences. Programs that PCR offers include basketball, chorus, basic communication skills, music therapy, art, photography, Tai Ji (martial arts), and a Friday night social club. They have a Mens's Group and a Women's Group that meets in a local church and they have special events like Earth Day activities. In addition, they offer a Sunday afternoon respite program with many fun and therapeutic activities, once a month.
PCR sends out a periodic newsletter, has a website and is on Facebook. If you are in the Washington D.C. metropolitan area and think you might be interested in looking into PCR activities, the Spring sessions end in July, so there is time to register for the next sessions.
To read more about PCR or to register for these programs, copy and paste this URL
http://www.pcr-inc.org
PCR sends out a periodic newsletter, has a website and is on Facebook. If you are in the Washington D.C. metropolitan area and think you might be interested in looking into PCR activities, the Spring sessions end in July, so there is time to register for the next sessions.
To read more about PCR or to register for these programs, copy and paste this URL
http://www.pcr-inc.org
Genetic Mutations Involved in Many Cases of Autism
In the news today, an interesting article about the causes of autism:
Autism Result Of Scores Of Genetic Mutations, Researchers Say
By SHAUN HEASLEY
June 9, 2011 Text Size A A
Hundreds of spontaneous gene mutations may be responsible for the development of autism in families without a history of the disorder.
In three studies published Thursday in the journal Neuron, researchers from Yale University, Columbia University and Cold Spring Harbor Laboratory in New York looked at gene analyses from over 1,000 families where one child had an autism diagnosis but the parents and the child’s siblings did not.
They found that children with autism had more copy number variants, or sections of DNA that are duplicated or missing, as compared to their siblings without the disorder. The gene variants were wide-ranging, but were involved in the formation of synapses which are responsible for communication in the brain and other parts of the nervous system.
“The diversity implies that a treatment for one form of autism may have no value for the majority,” says Dr. Michael Wigler of the Cold Spring Harbor Laboratory who led one of the studies. “This type of knowledge is a critical first step in developing novel treatment approaches.”
In addition, the researchers found that a greater number of gene variants seemed to be required in order to trigger autism in girls, which could help explain why the developmental disorder occurs more frequently in boys than girls.
One group of genes proved to be of particular interest to researchers because their addition or deletion resulted in two opposite phenomenon. When extra copies of this group were present, the genes triggered autism. But when this group was missing, Williams syndrome occurred, a condition characterized by extreme sociability and friendliness.
“This relatively small genomic interval clearly holds important clues to understanding the social brain,” said Dr. Matthew W. State from Yale University who led one of the studies.
Autism Result Of Scores Of Genetic Mutations, Researchers Say
By SHAUN HEASLEY
June 9, 2011 Text Size A A
Hundreds of spontaneous gene mutations may be responsible for the development of autism in families without a history of the disorder.
In three studies published Thursday in the journal Neuron, researchers from Yale University, Columbia University and Cold Spring Harbor Laboratory in New York looked at gene analyses from over 1,000 families where one child had an autism diagnosis but the parents and the child’s siblings did not.
They found that children with autism had more copy number variants, or sections of DNA that are duplicated or missing, as compared to their siblings without the disorder. The gene variants were wide-ranging, but were involved in the formation of synapses which are responsible for communication in the brain and other parts of the nervous system.
“The diversity implies that a treatment for one form of autism may have no value for the majority,” says Dr. Michael Wigler of the Cold Spring Harbor Laboratory who led one of the studies. “This type of knowledge is a critical first step in developing novel treatment approaches.”
In addition, the researchers found that a greater number of gene variants seemed to be required in order to trigger autism in girls, which could help explain why the developmental disorder occurs more frequently in boys than girls.
One group of genes proved to be of particular interest to researchers because their addition or deletion resulted in two opposite phenomenon. When extra copies of this group were present, the genes triggered autism. But when this group was missing, Williams syndrome occurred, a condition characterized by extreme sociability and friendliness.
“This relatively small genomic interval clearly holds important clues to understanding the social brain,” said Dr. Matthew W. State from Yale University who led one of the studies.
Wednesday, June 8, 2011
A Self Directed Life Facebook Page
There is now another way to link to this blog and read the latest posts. A Facebook Page has been set up and comments on the wall are encouraged. Tell me what posts have been useful or interesting, and what topics you would like more information about! Share the Blog with anyone who might benefit from the information. That is what this is all about.
Tuesday, June 7, 2011
The Miracle League
I came across this story accidentally and it brought tears to my eyes. The crazy thing is that the project is happening less than a mile from my home, and I had no idea that it existed until now.
The Kiwanis Club of Bethesda is trying to build a baseball field for disabled children and young adults. They believe that every child deserves a chance to play baseball. The project is called the MIRACLE LEAGUE.
They are are "building a specially equipped baseball field that will give mentally or physically challenged children the recreational opportunity they deserve. Construction of the field requires special design, specifications, and details to be accessible to disabled children." They "are in the process of raising the funds to build this field; hopefully by the spring of 2010." (As of this date, the project is progressing but is not completed yet)
The Miracle League will give these children the opportunity to get out in the sunshine, and enjoy playing the game of baseball in its purest form. It is the first of its kind in Maryland and will serve children in Montgomery County, the surrounding counties, DC, and Virginia.
The Miracle League Field will be located in the South Germantown Recreational Park off
Schaeffer Road, directly across from the soccer complex."
"During each Miracle League game, each child will have a chance at bat and to score a run. Miracle League team members will be assigned buddies who will assist them in hitting the ball and “running” the bases. Fellow schoolmates, members of Kiwanis Key Clubs, college students, business leaders or anyone who wishes to volunteer their time, will be enlisted as buddies to give each child the gift of baseball."
To read more about the project, copy and paste this URL:
http://miracleleaguemontcomd.com
The Kiwanis Club of Bethesda is trying to build a baseball field for disabled children and young adults. They believe that every child deserves a chance to play baseball. The project is called the MIRACLE LEAGUE.
They are are "building a specially equipped baseball field that will give mentally or physically challenged children the recreational opportunity they deserve. Construction of the field requires special design, specifications, and details to be accessible to disabled children." They "are in the process of raising the funds to build this field; hopefully by the spring of 2010." (As of this date, the project is progressing but is not completed yet)
The Miracle League will give these children the opportunity to get out in the sunshine, and enjoy playing the game of baseball in its purest form. It is the first of its kind in Maryland and will serve children in Montgomery County, the surrounding counties, DC, and Virginia.
The Miracle League Field will be located in the South Germantown Recreational Park off
Schaeffer Road, directly across from the soccer complex."
"During each Miracle League game, each child will have a chance at bat and to score a run. Miracle League team members will be assigned buddies who will assist them in hitting the ball and “running” the bases. Fellow schoolmates, members of Kiwanis Key Clubs, college students, business leaders or anyone who wishes to volunteer their time, will be enlisted as buddies to give each child the gift of baseball."
To read more about the project, copy and paste this URL:
http://miracleleaguemontcomd.com
Do You Need Legal Assistance?
Have you heard of the Maryland Disability Law Center?
The home page of their website has this to say about what they do:
"
MDLC envisions a world where people with disabilities are fully included in the workplace, neighborhoods and all aspects of community life. To move us toward this vision, we focus our advocacy toward:
Access to education, housing, health care, and more
Freedom from abuse and neglect and unnecessary institutionalization
Public awareness about people with disabilities and the issues that matter to them "
Under Services and Programs they list the following as their goals for this calendar year:
"Our 2011 advocacy service areas include:
Children’s Mental Health
Adult Mental Health
Developmental Disabilities
Education
Access to Community-based Services for People in Nursing Facilities
Access to Community-based Services for People with Traumatic Brain Injury
Civil Rights in Public Programs
Advocacy for Beneficiaries of Social Security
Voting Rights
Medicaid
Public Policy"
If you need legal support in these areas and are unable to afford legal fees, or if you would like to volunteer your services to the cause, you can read more about Maryland Disability Law Center by visiting this URL, just copy and paste it:
http://www.mdlclaw.org/
I have not personally utilized these services, but if you have, please comment and share your experience with other readers.
The home page of their website has this to say about what they do:
"
MDLC envisions a world where people with disabilities are fully included in the workplace, neighborhoods and all aspects of community life. To move us toward this vision, we focus our advocacy toward:
Access to education, housing, health care, and more
Freedom from abuse and neglect and unnecessary institutionalization
Public awareness about people with disabilities and the issues that matter to them "
Under Services and Programs they list the following as their goals for this calendar year:
"Our 2011 advocacy service areas include:
Children’s Mental Health
Adult Mental Health
Developmental Disabilities
Education
Access to Community-based Services for People in Nursing Facilities
Access to Community-based Services for People with Traumatic Brain Injury
Civil Rights in Public Programs
Advocacy for Beneficiaries of Social Security
Voting Rights
Medicaid
Public Policy"
If you need legal support in these areas and are unable to afford legal fees, or if you would like to volunteer your services to the cause, you can read more about Maryland Disability Law Center by visiting this URL, just copy and paste it:
http://www.mdlclaw.org/
I have not personally utilized these services, but if you have, please comment and share your experience with other readers.
Monday, June 6, 2011
Kids Enjoy Exercise Now- KEEN
What is Keen?
KEEN is a national, nonprofit volunteer-led organization that provides one-to-one recreational opportunities for children and young adults with developmental and physical disabilities at no cost to their families and caregivers. KEEN's mission is to foster the self-esteem, confidence, skills and talents of its athletes through non-competitive activities, allowing young people facing even the most significant challenges to meet their individual goals.
Copy and paste this URL to visit the home page for KEEN's website.
http://www.keenusa.org/
Under Programs, KEEN has this to say:
Programs
At the beginning of each KEEN session, all athletes and their coaches warm up as a large group and then pursue individual activities that are tailored solely to the needs of the athlete. Our core program, “KEEN Sports” takes place in a gym with a variety of sports equipment available. Athletes and coaches may throw a basketball or kick a soccer ball, or they may take a walk around an outdoor track. Many athletes love to bounce on our large therapy balls, and others enjoy speeding across the floor on our 4-wheeled scooter boards.
In addition to KEEN Sports, affiliates may offer other programs including KEEN Swim, which brings the KEEN formula to the pool, KEEN Tennis, KEEN Bowling, KEEN Fit, and even KEEN Music. Such diverse activities as Tai-Kwan-Do and Yoga have been adapted to fit KEEN’s approach. Check with your local affiliate to see what programs are offered in your area.
Each session ends with “Prouds.” Everyone comes together in a circle and shares with the group what they did that day that made them very Proud. Participants literally go out dancing to such great tunes as the Hokey-Pokey or the Macarena. Athletes burn energy, meet and interact with new volunteers, see old friends, and then rejoin their parents, who have had some precious respite time. At the end of the session, it’s hard to tell who has had more fun – the athletes or their coaches.
KEEN now has programs in the following 8 cities:
KEEN Greater DC
KEEN Chicago
KEEN Kansas City
KEEN St. Louis
KEEN Los Angeles
KEEN San Francisco
KEEN New York
KEEN Phoenix
KEEN is a national, nonprofit volunteer-led organization that provides one-to-one recreational opportunities for children and young adults with developmental and physical disabilities at no cost to their families and caregivers. KEEN's mission is to foster the self-esteem, confidence, skills and talents of its athletes through non-competitive activities, allowing young people facing even the most significant challenges to meet their individual goals.
Copy and paste this URL to visit the home page for KEEN's website.
http://www.keenusa.org/
Under Programs, KEEN has this to say:
Programs
At the beginning of each KEEN session, all athletes and their coaches warm up as a large group and then pursue individual activities that are tailored solely to the needs of the athlete. Our core program, “KEEN Sports” takes place in a gym with a variety of sports equipment available. Athletes and coaches may throw a basketball or kick a soccer ball, or they may take a walk around an outdoor track. Many athletes love to bounce on our large therapy balls, and others enjoy speeding across the floor on our 4-wheeled scooter boards.
In addition to KEEN Sports, affiliates may offer other programs including KEEN Swim, which brings the KEEN formula to the pool, KEEN Tennis, KEEN Bowling, KEEN Fit, and even KEEN Music. Such diverse activities as Tai-Kwan-Do and Yoga have been adapted to fit KEEN’s approach. Check with your local affiliate to see what programs are offered in your area.
Each session ends with “Prouds.” Everyone comes together in a circle and shares with the group what they did that day that made them very Proud. Participants literally go out dancing to such great tunes as the Hokey-Pokey or the Macarena. Athletes burn energy, meet and interact with new volunteers, see old friends, and then rejoin their parents, who have had some precious respite time. At the end of the session, it’s hard to tell who has had more fun – the athletes or their coaches.
KEEN now has programs in the following 8 cities:
KEEN Greater DC
KEEN Chicago
KEEN Kansas City
KEEN St. Louis
KEEN Los Angeles
KEEN San Francisco
KEEN New York
KEEN Phoenix
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