Parent Education and Support Committee launches Hand 2 Hand Program!
The Parent Education and Support Committee is proud to announce a new program that will benefit families in the Indianapolis Central Indiana area. It is called Hand 2 Hand. This program will help to provide those in need with gently used clothing, furniture, children’s toys and adaptability items free of charge. If you have a child with Down syndrome or a disability and are in need of any of these items, please email Jenni at hand2hand4indy@aol.com.
Three examples of how this program can work are as follows:
1. A child is unexpectedly hospitalized. The family can request clothing, especially pajamas that snap down the front to accommodate necessary medical procedures while wearing more comfortable clothing.
2. A self advocate (adult with Down syndrome) moves into a new apartment and is in need of furniture and dishes to furnish the apartment. DSI can help!
3. A single parent has a child with Down syndrome and has a serious financial need. The family can request items from Down Syndrome Indiana such as gently used clothes that have already been altered to fit a child with Down syndrome.
How does it work?
If you are in need of any of these items, please just contact Jenni at hand2hand4indy@aol.com or call her directly at 317-835-2492.
Storage space for this program was generously donated by D and D’s Strictly Storage.
Friday, July 24, 2009
Thursday, July 16, 2009
Let’s all help the disability community be portrayed in a much more positive light!
Recently (and of course in the past too), there have been well meaning articles written about individuals with Down syndrome or any disability for that matter where instead of language that positively portrays the individual, the media will use the words, “afflicted with” or, “suffers from” instead of focusing on the ability of the individual. Many parents are just tired of working so hard to have their children included in school and the community, etc. only to have one newsletter article make it feel like all their hard work over the years was in vain and they still have so far to go. Let’s all help the disability community be portrayed in a much more positive light! When writing about individuals with a disability, here are some simple guidelines to follow courtesy of the Indiana Governor’s Council for People with Disabilities:
Guidelines for Reporting and Writing About People with Disabilities
When writing, it’s important to be concise, particularly in journalism. However, sometimes the effort to limit wordiness leads to inappropriate references to people with disabilities. The following guidelines explain preferred terminology and reflect input from more than 100 national disability organizations. These guidelines have been reviewed and endorsed by media and disability experts throughout the country. Although opinions may differ on some terms, the guidelines represent the current consensus among disability organizations. Portions of the guidelines have been adopted into the “Associated Press Stylebook,” a basic reference for professional journalists.
DO NOT FOCUS ON DISABILITY unless it is crucial to a story. Avoid tear-jerking human interest stories about incurable diseases, congenital impairments or severe injury. Focus instead on issues that affect the quality of life for those individuals, such as accessible transportation, housing, affordable health care, employment opportunities and discrimination.
PUT PEOPLE FIRST, not their disability. Say “woman with arthritis,” “children who are deaf” or “people with disabilities.” This puts the focus on the individual, not the particular functional limitation. Despite editorial pressures to be succinct, it is never acceptable to use “crippled,” “deformed,” “suffers from,” “victim of,” “the retarded,” “the deaf and dumb,” etc.
DO NOT SENSATIONALIZE A DISABILITY by writing “afflicted with,” “crippled with,” “suffers from,” “victim of” and so on. Instead, write “person who has multiple sclerosis” or “man who had polio.”
DO NOT USE GENERIC LABELS for disability groups, such as “the retarded” or “the deaf.” Emphasize people, not labels. Say “people with mental retardation” or “people who are deaf.”
EMPHASIZE ABILITIES, not limitations. For example:
· Correct: “uses a wheelchair/braces” or “walks with crutches”
· Incorrect: “confined to a wheelchair,” “wheelchair-bound” or “crippled”
Similarly, do not use emotional descriptors such as “unfortunate,” “pitiful” and similar phrases.
Disability groups also strongly object to using euphemisms to describe disabilities. Terms such as “handi-capable,” “mentally different,” “physically inconvenienced” and “physically challenged” are considered condescending. They reinforce the idea that disabilities cannot be dealt with directly and candidly.
SHOW PEOPLE WITH DISABILITIES AS ACTIVE participants in society. Portraying persons with disabilities interacting with people without disabilities in social and work environments helps break down barriers and open lines of communications.
DO NOT PORTRAY SUCCESSFUL PEOPLE WITH DISABILITIES AS SUPERHUMAN. Many people with disabilities do not want to be “hero-ized.” Like many people without disabilities, they wish to be fully included in our communities and do not want to be judged based on unreasonable expectations.
DO NOT IMPLY DISEASE when discussing disabilities that result from a prior disease episode. People who had polio and experienced after-effects have a post-polio disability. They are not currently experiencing the disease. Do not imply disease with people whose disability has resulted from anatomical or physiological damage (e.g., person with spina bifida or cerebral palsy). Reference to the disease associated with a disability is acceptable only with chronic diseases, such as arthritis, Parkinson’s disease or multiple sclerosis. People with disabilities should never be referred to as “patients” or “cases” unless their relationship with their doctor is under discussion.
LISTED BELOW ARE PREFERRED WORDS THAT REFLECT A POSITIVE ATTITUDE IN PORTRAYING DISABILITIES:
· Brain injury. Describes a condition where there is long-term or temporary disruption in brain function resulting from injury to the brain. Difficulties with cognitive, physical, emotional or social functioning may occur. Use “person with a brain injury,” “woman who has sustained brain injury” or “boy with an acquired brain injury.”
· Cleft lip. Describes a specific congenital disability involving lip and gum. The term “hare lip” is anatomically incorrect and stigmatizing. Use “person who has a cleft lip” or “a cleft palate.”
· Deaf. Deafness refers to a profound degree of hearing loss that prevents understanding speech though the ear. “Hearing impaired” and “hearing loss” are generic terms used by some individuals to indicate any degree of hearing loss – from mild to profound. These terms include people who are hard of hearing and deaf. However, some individuals completely disfavor the term “hearing impaired.” Others prefer to use “deaf” or “hard of hearing.” “Hard of hearing” refers to a mild to moderate hearing loss that may or may not be corrected with amplification. Use “woman who is deaf,” “boy who is hard of hearing,” “individuals with hearing losses” and “people who are deaf or hard of hearing.”
· Disability. General term used for a functional limitation that interferes with a person’s ability to, for example, walk, lift, hear or learn. It may refer to a physical, sensory or mental condition. Use as a descriptive noun or adjective, such as “person living with AIDS,” “woman who is blind” or “man with a disability.” “Impairment” refers to loss or abnormality of an organ or body mechanism, which may result in a disability.
· Disfigurement. Refers to physical changes caused by burn, trauma, disease or congenital problems.
· Down syndrome. Describes a chromosome disorder that usually causes a delay in physical, intellectual and language development. Usually results in mental retardation. “Mongol” or “mongoloid” are unacceptable.
· Handicap. Not a synonym for disability. Describes a condition or barrier imposed by society, the environment or by one’s self. Some individuals prefer “inaccessible” or “not accessible” to describe social and environmental barriers. “Handicap” can be used when citing laws and situations, but should not be used to describe a disability. Do not refer to people with disabilities as “the handicapped” or “handicapped people.” Say “the building is not accessible for a wheelchair-user.” “The stairs are a handicap for her.”
· HIV/AIDS. Acquired immunodeficiency syndrome is an infectious disease resulting in the loss of the body’s immune system to ward off infections. The disease is caused by the human immunodeficiency virus (HIV). A positive test for HIV can occur without symptoms of the illnesses, which usually develop up to 10 years later, including tuberculosis, recurring pneumonia, cancer, recurrent vaginal yeast infections, intestinal ailments, chronic weakness and fever and profound weight loss. Preferred: “people living with HIV,” “people with AIDS” or “living with AIDS.”
· Mental disability. The Federal Rehabilitation Act (Section 504) lists four categories under mental disability: “psychiatric disability,” “retardation,” “learning disability” or “cognitive impairment” is acceptable.
· Nondisabled. Appropriate term for people without disabilities. “Normal,” “able-bodied,” “healthy” or “whole” are inappropriate.
· Seizure. Describes an involuntary muscular contraction, a brief impairment or loss of consciousness, etc., resulting from a neurological condition such as epilepsy or from an acquired brain injury. Rather than “epileptic,” say “girl with epilepsy” or “boy with a seizure disorder.” The term “convulsion” should be used only for seizures involving contraction of the entire body.
· Spastic. Describes a muscle with sudden abnormal and involuntary spasm. Not appropriate for describing someone with cerebral palsy or a neurological disorder. Muscles, not people, are spastic.
· Stroke. Caused by interruption of blood to brain. Hemiplegia (paralysis on one side) may result. “Stroke survivor” is preferred over “stroke victim.”
The Governor’s Council for People with Disabilities would like to acknowledge the Research and Training Center on Independent Living at the University of Kansas for the usage rights of the “Guidelines.”
Guidelines for Reporting and Writing About People with Disabilities
When writing, it’s important to be concise, particularly in journalism. However, sometimes the effort to limit wordiness leads to inappropriate references to people with disabilities. The following guidelines explain preferred terminology and reflect input from more than 100 national disability organizations. These guidelines have been reviewed and endorsed by media and disability experts throughout the country. Although opinions may differ on some terms, the guidelines represent the current consensus among disability organizations. Portions of the guidelines have been adopted into the “Associated Press Stylebook,” a basic reference for professional journalists.
DO NOT FOCUS ON DISABILITY unless it is crucial to a story. Avoid tear-jerking human interest stories about incurable diseases, congenital impairments or severe injury. Focus instead on issues that affect the quality of life for those individuals, such as accessible transportation, housing, affordable health care, employment opportunities and discrimination.
PUT PEOPLE FIRST, not their disability. Say “woman with arthritis,” “children who are deaf” or “people with disabilities.” This puts the focus on the individual, not the particular functional limitation. Despite editorial pressures to be succinct, it is never acceptable to use “crippled,” “deformed,” “suffers from,” “victim of,” “the retarded,” “the deaf and dumb,” etc.
DO NOT SENSATIONALIZE A DISABILITY by writing “afflicted with,” “crippled with,” “suffers from,” “victim of” and so on. Instead, write “person who has multiple sclerosis” or “man who had polio.”
DO NOT USE GENERIC LABELS for disability groups, such as “the retarded” or “the deaf.” Emphasize people, not labels. Say “people with mental retardation” or “people who are deaf.”
EMPHASIZE ABILITIES, not limitations. For example:
· Correct: “uses a wheelchair/braces” or “walks with crutches”
· Incorrect: “confined to a wheelchair,” “wheelchair-bound” or “crippled”
Similarly, do not use emotional descriptors such as “unfortunate,” “pitiful” and similar phrases.
Disability groups also strongly object to using euphemisms to describe disabilities. Terms such as “handi-capable,” “mentally different,” “physically inconvenienced” and “physically challenged” are considered condescending. They reinforce the idea that disabilities cannot be dealt with directly and candidly.
SHOW PEOPLE WITH DISABILITIES AS ACTIVE participants in society. Portraying persons with disabilities interacting with people without disabilities in social and work environments helps break down barriers and open lines of communications.
DO NOT PORTRAY SUCCESSFUL PEOPLE WITH DISABILITIES AS SUPERHUMAN. Many people with disabilities do not want to be “hero-ized.” Like many people without disabilities, they wish to be fully included in our communities and do not want to be judged based on unreasonable expectations.
DO NOT IMPLY DISEASE when discussing disabilities that result from a prior disease episode. People who had polio and experienced after-effects have a post-polio disability. They are not currently experiencing the disease. Do not imply disease with people whose disability has resulted from anatomical or physiological damage (e.g., person with spina bifida or cerebral palsy). Reference to the disease associated with a disability is acceptable only with chronic diseases, such as arthritis, Parkinson’s disease or multiple sclerosis. People with disabilities should never be referred to as “patients” or “cases” unless their relationship with their doctor is under discussion.
LISTED BELOW ARE PREFERRED WORDS THAT REFLECT A POSITIVE ATTITUDE IN PORTRAYING DISABILITIES:
· Brain injury. Describes a condition where there is long-term or temporary disruption in brain function resulting from injury to the brain. Difficulties with cognitive, physical, emotional or social functioning may occur. Use “person with a brain injury,” “woman who has sustained brain injury” or “boy with an acquired brain injury.”
· Cleft lip. Describes a specific congenital disability involving lip and gum. The term “hare lip” is anatomically incorrect and stigmatizing. Use “person who has a cleft lip” or “a cleft palate.”
· Deaf. Deafness refers to a profound degree of hearing loss that prevents understanding speech though the ear. “Hearing impaired” and “hearing loss” are generic terms used by some individuals to indicate any degree of hearing loss – from mild to profound. These terms include people who are hard of hearing and deaf. However, some individuals completely disfavor the term “hearing impaired.” Others prefer to use “deaf” or “hard of hearing.” “Hard of hearing” refers to a mild to moderate hearing loss that may or may not be corrected with amplification. Use “woman who is deaf,” “boy who is hard of hearing,” “individuals with hearing losses” and “people who are deaf or hard of hearing.”
· Disability. General term used for a functional limitation that interferes with a person’s ability to, for example, walk, lift, hear or learn. It may refer to a physical, sensory or mental condition. Use as a descriptive noun or adjective, such as “person living with AIDS,” “woman who is blind” or “man with a disability.” “Impairment” refers to loss or abnormality of an organ or body mechanism, which may result in a disability.
· Disfigurement. Refers to physical changes caused by burn, trauma, disease or congenital problems.
· Down syndrome. Describes a chromosome disorder that usually causes a delay in physical, intellectual and language development. Usually results in mental retardation. “Mongol” or “mongoloid” are unacceptable.
· Handicap. Not a synonym for disability. Describes a condition or barrier imposed by society, the environment or by one’s self. Some individuals prefer “inaccessible” or “not accessible” to describe social and environmental barriers. “Handicap” can be used when citing laws and situations, but should not be used to describe a disability. Do not refer to people with disabilities as “the handicapped” or “handicapped people.” Say “the building is not accessible for a wheelchair-user.” “The stairs are a handicap for her.”
· HIV/AIDS. Acquired immunodeficiency syndrome is an infectious disease resulting in the loss of the body’s immune system to ward off infections. The disease is caused by the human immunodeficiency virus (HIV). A positive test for HIV can occur without symptoms of the illnesses, which usually develop up to 10 years later, including tuberculosis, recurring pneumonia, cancer, recurrent vaginal yeast infections, intestinal ailments, chronic weakness and fever and profound weight loss. Preferred: “people living with HIV,” “people with AIDS” or “living with AIDS.”
· Mental disability. The Federal Rehabilitation Act (Section 504) lists four categories under mental disability: “psychiatric disability,” “retardation,” “learning disability” or “cognitive impairment” is acceptable.
· Nondisabled. Appropriate term for people without disabilities. “Normal,” “able-bodied,” “healthy” or “whole” are inappropriate.
· Seizure. Describes an involuntary muscular contraction, a brief impairment or loss of consciousness, etc., resulting from a neurological condition such as epilepsy or from an acquired brain injury. Rather than “epileptic,” say “girl with epilepsy” or “boy with a seizure disorder.” The term “convulsion” should be used only for seizures involving contraction of the entire body.
· Spastic. Describes a muscle with sudden abnormal and involuntary spasm. Not appropriate for describing someone with cerebral palsy or a neurological disorder. Muscles, not people, are spastic.
· Stroke. Caused by interruption of blood to brain. Hemiplegia (paralysis on one side) may result. “Stroke survivor” is preferred over “stroke victim.”
The Governor’s Council for People with Disabilities would like to acknowledge the Research and Training Center on Independent Living at the University of Kansas for the usage rights of the “Guidelines.”
Thursday, July 9, 2009
Contact your US House member today and ask them to cosponsor H.R. 2740, the IDEA Fairness Restoration Act
Your help is needed to restore fairness to the IDEA! PLEASE contact your US House member today and ask them to cosponsor H.R. 2740, the IDEA Fairness and Restoration Act.
This bill was introduced in the last legislative session and now is being reintroduced. Ask friends, colleagues, clients, and family members to call too. It will only take a few minutes. If you can't make the call today, please call as soon as possible afterwards.
Dial 202-224-3121 (TTY 202-225-1904). This is Congress' main switchboard. Ask for your Representative's office. When you are connected, ask for the Aide who handles education or disability. If you get voicemail, please leave a message. Tell them you are a constituent and would like the Congressperson to co-sponsor H.R. 2740, the IDEA Fairness Restoration Act. You can find out who your Representative is by going to http://capwiz.com/ndss/dbq/officials/?command=local.
Background:
In the pursuit of a free and appropriate public education for their children with disabilities, parents and caregivers may have issues with their local school that are difficult to resolve. Sometimes, the courts become involved in settling these very difficult cases. But, this can come at great expense to parents and caregivers. When the Individuals with Disabilities Education Act (IDEA) was amended in 1986, it authorized a judge to award parents or caregivers attorney's fees if the court found that a child was denied an appropriate education by the public school. The Conference Report accompanying that law states that, in those cases judges could award expert witness fees and reasonable costs of tests or evaluations necessary for preparation of a parent's case.
Unfortunately, in 2006 the US Supreme Court decided that the expert witness fees were not specifically called out in the statute and therefore parents were not entitled to reimbursement of these fees even when they prevailed in court. Legislation has been introduced in the US House of Representatives to restore the IDEA to the intent of congress when they amended the IDEA.
If you have questions, please contact Ricki Sabia at rsabia@ndss.org or Susan Goodman at Susan@ndsccenter.org
On behalf of the Down Syndrome Indiana, the DSI Governmental Affairs Committee and families everywhere, I would like to thank you for your participation!
This bill was introduced in the last legislative session and now is being reintroduced. Ask friends, colleagues, clients, and family members to call too. It will only take a few minutes. If you can't make the call today, please call as soon as possible afterwards.
Dial 202-224-3121 (TTY 202-225-1904). This is Congress' main switchboard. Ask for your Representative's office. When you are connected, ask for the Aide who handles education or disability. If you get voicemail, please leave a message. Tell them you are a constituent and would like the Congressperson to co-sponsor H.R. 2740, the IDEA Fairness Restoration Act. You can find out who your Representative is by going to http://capwiz.com/ndss/dbq/officials/?command=local.
Background:
In the pursuit of a free and appropriate public education for their children with disabilities, parents and caregivers may have issues with their local school that are difficult to resolve. Sometimes, the courts become involved in settling these very difficult cases. But, this can come at great expense to parents and caregivers. When the Individuals with Disabilities Education Act (IDEA) was amended in 1986, it authorized a judge to award parents or caregivers attorney's fees if the court found that a child was denied an appropriate education by the public school. The Conference Report accompanying that law states that, in those cases judges could award expert witness fees and reasonable costs of tests or evaluations necessary for preparation of a parent's case.
Unfortunately, in 2006 the US Supreme Court decided that the expert witness fees were not specifically called out in the statute and therefore parents were not entitled to reimbursement of these fees even when they prevailed in court. Legislation has been introduced in the US House of Representatives to restore the IDEA to the intent of congress when they amended the IDEA.
If you have questions, please contact Ricki Sabia at rsabia@ndss.org or Susan Goodman at Susan@ndsccenter.org
On behalf of the Down Syndrome Indiana, the DSI Governmental Affairs Committee and families everywhere, I would like to thank you for your participation!
Thursday, July 2, 2009
Reasons to Celebrate: Kennedy-Brownback gets funded and Indy is ranked #1 in Accessibility
Great news! The Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act gets funded to the tune of $820,000 over the next four years. This is what many Ds organizations advocated for when we made our trip to Washington DC earlier this year. According the National Down Syndrome Society and the National Down Syndrome Congress, “The funding "seeks to increase patient referrals to providers of key support services for women who have received a positive test diagnosis for Down Syndrome, Spina Bifida, Dwarfism and other prenatally or postnatally diagnosed conditions; strengthen existing networks of support through outreach programs; improve available data by incorporating up-to-date, evidence-based information into existing state programs for birth defects and prenatally or postnatally diagnosed conditions and ensure that patients receive information about the accuracy of the diagnostic tests for the conditions. Provisions also include the establishment of or increased access to a resource hotline." The actual bill was signed into law by former President Bush on October 8, 2008. However, it did not come with any Congressional appropriations to enact the recommendations until now.
This has the Down syndrome community excited because we want our families to be provided with up to date and accurate information about raising a child with Down syndrome. It is currently estimated that 90% of women who receive a prenatal diagnosis of Down syndrome terminate the pregnancy. This is not a prolife or prochoice issue, again, this is just making sure that women are presented with up to date and accurate information. For example, do families know that there is a waiting list to adopt a child with Down syndrome? If they knew this, would they rethink abortion? Are mothers really still being told that their child will not know how to count change or ever get a job? Some are and we want to make sure that parents have the opportunity to learn more about Down syndrome and the joys of raising or even of knowing individuals with Down syndrome because those statements are simply not true!
For a change let’s thank our congressional representatives for making this happen!
Also, did you know that in April 2009, Indianapolis, Indiana was chosen as the winner of the Accessible America Competition? The National Organization on Disability (NOD) chose the city as a national model for, “its focus on disability issues and successful design of programs, services and facilities that are accessible for citizens and visitors that have disabilities”. Some say we still have a long way to go. What do you think?
This has the Down syndrome community excited because we want our families to be provided with up to date and accurate information about raising a child with Down syndrome. It is currently estimated that 90% of women who receive a prenatal diagnosis of Down syndrome terminate the pregnancy. This is not a prolife or prochoice issue, again, this is just making sure that women are presented with up to date and accurate information. For example, do families know that there is a waiting list to adopt a child with Down syndrome? If they knew this, would they rethink abortion? Are mothers really still being told that their child will not know how to count change or ever get a job? Some are and we want to make sure that parents have the opportunity to learn more about Down syndrome and the joys of raising or even of knowing individuals with Down syndrome because those statements are simply not true!
For a change let’s thank our congressional representatives for making this happen!
Also, did you know that in April 2009, Indianapolis, Indiana was chosen as the winner of the Accessible America Competition? The National Organization on Disability (NOD) chose the city as a national model for, “its focus on disability issues and successful design of programs, services and facilities that are accessible for citizens and visitors that have disabilities”. Some say we still have a long way to go. What do you think?
Friday, June 19, 2009
How is Indiana doing in providing a free and appropriate public education for students with disabilities?
I would like to share with you information from the Down Syndrome Indiana Governmental Affairs Committee Chair, Tom Milvert. I think his message is more important than anything I have to say today...
Every year the US Department of Education assesses the performance of how well each state is doing in ensuring that students with disabilities receive a free and appropriate public education. The assessment is based on a State Performance Plan (SPP) that each state department of education submitted to the US Department of Education after the Individuals with Disabilities Education Act (IDEA) was reauthorized in 2004.
So how is Indiana doing in providing a free and appropriate public education for students with disabilities?
The latest state assessment results have been published and Indiana is…..
At the absolute bottom of all educational jurisdictions that were assessed. And to make it worse we have been at the bottom for three consecutive years. Below is a summary of the results:
---------------------------
Following is each state's performance in meeting the requirements of IDEA Part B, which serves students with disabilities, ages 3 through 21:
MEETS REQUIREMENTS-Alabama, Alaska, Arkansas, Arizona, California, Commonwealth of the Northern Mariana Islands, Connecticut, , Hawaii, Idaho, Iowa, Kansas, Maryland, Michigan, Minnesota, Mississippi, Missouri, Montana, North Carolina, North Dakota, New Jersey, Ohio, Oklahoma, Oregon, Republic of Marshall Islands, South Dakota, Utah, Virginia, Washington, Wisconsin and Wyoming
NEEDS ASSISTANCE-Delaware, Guam, Pennsylvania, Puerto Rico, Texas, Virgin Islands and Vermont
NEEDS ASSISTANCE (two consecutive years)-American Samoa, Federated States of Micronesia , Florida, Georgia, Illinois, Kentucky, Massachusetts, Maine, Nebraska, New Hampshire, Nevada, New Mexico, New York, Palau, South Carolina, Tennessee and West Virginia
NEEDS INTERVENTION-Bureau of Indian Education, Louisiana and Rhode Island
NEEDS INTERVENTION (three consecutive years)-Colorado, District of Columbia and Indiana
[Ref: US Department of Education]
------------------------------
To read more details follow this link:
http://www.ed.gov/policy/speced/guid/idea/monitor/factsheet09.html
Our children in Indiana deserve better than last place. For to long, the Indiana Department of Education has failed to provide the leadership and has failed to provide the guidance and accountability that is required to ensure that every student, in every school, in every community, in Indiana receives the special education services and supports that they are entitled to. It is time for change and time for accountability in Indiana. Our children deserve better than “free”; they deserve the appropriate education that the IDEA guarantees.
Over the next few days and weeks I will provide some additional information on this topic and together we can form a plan to address this as a unified community.
Please let Tom know if you have any questions on this topic.
Thanks,
Tom Milvert
Down Syndrome Indiana
Governmental Affairs Committee Chair
Thanks for sharing Tom!!!!
Every year the US Department of Education assesses the performance of how well each state is doing in ensuring that students with disabilities receive a free and appropriate public education. The assessment is based on a State Performance Plan (SPP) that each state department of education submitted to the US Department of Education after the Individuals with Disabilities Education Act (IDEA) was reauthorized in 2004.
So how is Indiana doing in providing a free and appropriate public education for students with disabilities?
The latest state assessment results have been published and Indiana is…..
At the absolute bottom of all educational jurisdictions that were assessed. And to make it worse we have been at the bottom for three consecutive years. Below is a summary of the results:
---------------------------
Following is each state's performance in meeting the requirements of IDEA Part B, which serves students with disabilities, ages 3 through 21:
MEETS REQUIREMENTS-Alabama, Alaska, Arkansas, Arizona, California, Commonwealth of the Northern Mariana Islands, Connecticut, , Hawaii, Idaho, Iowa, Kansas, Maryland, Michigan, Minnesota, Mississippi, Missouri, Montana, North Carolina, North Dakota, New Jersey, Ohio, Oklahoma, Oregon, Republic of Marshall Islands, South Dakota, Utah, Virginia, Washington, Wisconsin and Wyoming
NEEDS ASSISTANCE-Delaware, Guam, Pennsylvania, Puerto Rico, Texas, Virgin Islands and Vermont
NEEDS ASSISTANCE (two consecutive years)-American Samoa, Federated States of Micronesia , Florida, Georgia, Illinois, Kentucky, Massachusetts, Maine, Nebraska, New Hampshire, Nevada, New Mexico, New York, Palau, South Carolina, Tennessee and West Virginia
NEEDS INTERVENTION-Bureau of Indian Education, Louisiana and Rhode Island
NEEDS INTERVENTION (three consecutive years)-Colorado, District of Columbia and Indiana
[Ref: US Department of Education]
------------------------------
To read more details follow this link:
http://www.ed.gov/policy/speced/guid/idea/monitor/factsheet09.html
Our children in Indiana deserve better than last place. For to long, the Indiana Department of Education has failed to provide the leadership and has failed to provide the guidance and accountability that is required to ensure that every student, in every school, in every community, in Indiana receives the special education services and supports that they are entitled to. It is time for change and time for accountability in Indiana. Our children deserve better than “free”; they deserve the appropriate education that the IDEA guarantees.
Over the next few days and weeks I will provide some additional information on this topic and together we can form a plan to address this as a unified community.
Please let Tom know if you have any questions on this topic.
Thanks,
Tom Milvert
Down Syndrome Indiana
Governmental Affairs Committee Chair
Thanks for sharing Tom!!!!
Thursday, June 11, 2009
On coming together...
On coming together…
Sam Walton, founder of Wal-Mart once said, “Individuals don’t win. Teams do. “ Well, let me tell you about the great great teamwork that I see happening in Indiana to enhance the lives of individuals with Down syndrome and disabilities in general:
· There is now an active Government Action Committee in Indiana that meets via conference call monthly to discuss public policy initiatives that affect our community. This committee is made up of Down syndrome organizations from throughout the State of Indiana that want to form a more unified movement. In addition to giving us a stronger voice and the ability to mobilize quickly on important issues, the committee is also putting together a map of what counties each organization covers, identifying gaps and then coming up with a plan to make sure all of Indiana has access to the information and support that it needs! Ever hear of the Autism Health Insurance mandate? Well, hopefully through the work of this committee you will see a Down syndrome Health Insurance mandate as well.
· I just got off the phone with an amazing group of individuals representing Down Syndrome Indiana, the ARC of Indiana, the National Down Syndrome Society, the Autism Society of Indiana and the Indiana Institute on Disability and Community to improve post secondary education options for individuals with developmental disabilities in Indiana. There will be a meeting on July 28th, 2009 that is open to everyone to talk about this wonderful topic. The meeting will be held at St. Lukes United Methodist Church in Indianapolis from 6 to 8pm and everyone is invited to attend!
· A group of Master of Public Health students at IUPUI along with Riley Children’s Hospital are teaming up create a transition packet for individuals with Down syndrome that are transitioning from high school into the adult world. This will help to fill an unmet need in the community for more information for adults with Down syndrome.
· The Autism Society of Indiana is working to identify the needs of minorities with a disability and what type of support groups would be helpful to these families. In fact, the Autism Society and Down Syndrome Indiana are also combining the Hispanic parent groups during the summer months. Many of the issues that are discussed during parent group meetings are the same even though the disability may be different therefore it makes sense to try to reach a broader population instead of segregating this growing community.
· Get ready for green office space for nonprofits in Indianapolis! There is a committee that will begin meeting regularly to create a green office building for health related nonprofits. The focus of the building will be a healthy workplace and the goal is to create a building where nonprofit organizations can share resources to further their mission. Everything will be designed with the environment and easy access for individuals with disabilities in mind. How exciting is that?! Look for it in 2010 or 2011! (You guessed it, DSI gets to be part of the planning process.)
And those are just the tip of the iceburg! I am so proud of the Down syndrome community and disability community as a whole for really coming together to enhance the lives of , well, everyone! As Harry Truman once said, “ It is amazing what you can accomplish if you do not care who gets the credit.” Keep up the great work everyone!!!! Until next Thursday….
Sam Walton, founder of Wal-Mart once said, “Individuals don’t win. Teams do. “ Well, let me tell you about the great great teamwork that I see happening in Indiana to enhance the lives of individuals with Down syndrome and disabilities in general:
· There is now an active Government Action Committee in Indiana that meets via conference call monthly to discuss public policy initiatives that affect our community. This committee is made up of Down syndrome organizations from throughout the State of Indiana that want to form a more unified movement. In addition to giving us a stronger voice and the ability to mobilize quickly on important issues, the committee is also putting together a map of what counties each organization covers, identifying gaps and then coming up with a plan to make sure all of Indiana has access to the information and support that it needs! Ever hear of the Autism Health Insurance mandate? Well, hopefully through the work of this committee you will see a Down syndrome Health Insurance mandate as well.
· I just got off the phone with an amazing group of individuals representing Down Syndrome Indiana, the ARC of Indiana, the National Down Syndrome Society, the Autism Society of Indiana and the Indiana Institute on Disability and Community to improve post secondary education options for individuals with developmental disabilities in Indiana. There will be a meeting on July 28th, 2009 that is open to everyone to talk about this wonderful topic. The meeting will be held at St. Lukes United Methodist Church in Indianapolis from 6 to 8pm and everyone is invited to attend!
· A group of Master of Public Health students at IUPUI along with Riley Children’s Hospital are teaming up create a transition packet for individuals with Down syndrome that are transitioning from high school into the adult world. This will help to fill an unmet need in the community for more information for adults with Down syndrome.
· The Autism Society of Indiana is working to identify the needs of minorities with a disability and what type of support groups would be helpful to these families. In fact, the Autism Society and Down Syndrome Indiana are also combining the Hispanic parent groups during the summer months. Many of the issues that are discussed during parent group meetings are the same even though the disability may be different therefore it makes sense to try to reach a broader population instead of segregating this growing community.
· Get ready for green office space for nonprofits in Indianapolis! There is a committee that will begin meeting regularly to create a green office building for health related nonprofits. The focus of the building will be a healthy workplace and the goal is to create a building where nonprofit organizations can share resources to further their mission. Everything will be designed with the environment and easy access for individuals with disabilities in mind. How exciting is that?! Look for it in 2010 or 2011! (You guessed it, DSI gets to be part of the planning process.)
And those are just the tip of the iceburg! I am so proud of the Down syndrome community and disability community as a whole for really coming together to enhance the lives of , well, everyone! As Harry Truman once said, “ It is amazing what you can accomplish if you do not care who gets the credit.” Keep up the great work everyone!!!! Until next Thursday….
Thursday, June 4, 2009
On what is important to self advocates...
Down Syndrome Indiana is in the process of working with several partners to create and distribute a transition packet to families that have an adult with Down syndrome transitioning from high school into the work world. On Tuesday, June 2nd, we held a mock focus group session to find out more about our self advocates and what is important to them during the transition from high school to the adult world. A huge thank you to all the self advocates that participated in our session on Tuesday and also, a huge thank you to the students at IUPUI and the faculty at Riley Children’s Hospital for making the evening possible. Now I would like to share with you what we learned:
On what is important for advocates to do for themselves…
On what is important for advocates to do for themselves…
Working is very important whether it be at a paid position or volunteer position.
They would like to live on their own in an apartment or home (but close to their parents).
They need assistance with money management and billing.
They want to have the freedom to be in a relationship with whom they choose.
On when to tell your parents you are in a relationship…
When they are in a good mood!
On what our advocates would like to teach the younger generation….
Self determination
Inclusion
How to cook!
That it is more important to look at abilities than a disability.
On goals…
To be on television
On Fitness and nutrition….
Wii Fit is a favorite!
Parents are the anti-drug.
Nutrition, weight management and healthy eating are important to all of our advocates.
Smoking and drugs are bad.
When it comes to drinking, it is not good but if you would like to know our favorite drinks just scroll down a little more because we are not about sharing family secrets.
On safety…
Don’t open doors for strangers.
Don’t take rides from strangers.
It is important to have emergency contact information available at all times.
On Heroes…
Chris Burke
On our favorite drinks…
Margaritas (not that we drink but if we did)
Green beer on St. Patrick’s day (not that we drink but we are over 21)
Bud Light (just sayin’ it’s a good drink, if we were to drink)
On what they do for fun…
Sports
Talk to friends
Volunteer at Down Syndrome Indiana (yes, it is fun, I am not making it up!)
Work
Cooking class
Swim
Bowl
Make (or was it eat) chocolate chip cookies
Go to the movies
Spend time with their families
On what the heck the meeting was about…
“Sex, drugs and beer.”
And the #1 most important item to our self advocates is: their family.
We also asked their parents what they wished they would have known when their adult children were transitioning from high school into the adult world but that will be in another blog because it’s not as entertaining! Or maybe it is, you will just have to visit again next Thursday to find out….
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