Friday, July 31, 2009

I want to know what you think!!!!

I want to hear from you! Please take a moment to fill out the survey that is now posted on the Down Syndrome Indiana website at:

Your input is essential to making sure that Down Syndrome Indiana continues to offer programs that are relevant and desired by its families all while carrying out its important mission of enhancing the lives of individuals with Down syndrome.

In the past, you told us that the DSI Buddy Walk® website was difficult to use. So the organization switched to a new online giving program, First Giving. DSI was told that its website needed to be easily accessible to new parents. DSI then revamped and launched an entire brand new website; please visit it at You said you wanted more information about events and DSI offered a quarterly newsletter, monthly event calendars and an annual report. You told us you wanted to hear more about the programs and services offered and less about fundraising . DSI expanded its programs dramatically. Some of the new programs include Hand2Hand, Cuenta Conmigos, the Minority Family Down Syndrome Network (MFDSN), the Lafayette Area Down Syndrome organization (LADSO), the Self Advocates Program and coming this fall an inclusion specialist program for schools and transition packets for adults with a disability that are transitioning from high school into the adult world. A brand new and extremely exciting endeavor that DSI is embarking on is to work with local colleges to establish a quality postsecondary education program in Indiana for adults with a developmental disability (we hope you feel you are hearing less about the fundraising!).

All of the above programs are a direct result of what our families have told us is important to them during our last strategic planning process. I don’t just want to hear what is important to you every couple of years though. I always want to know what is important to our families so please feel free to fill out the online survey now or whenever you have a wonderful idea that you would like to share with DSI. I want this to be an ongoing communication tool that you can use to improve Down Syndrome Indiana.

I look forward to hearing from you! Again, please feel free to fill out the survey at:

Friday, July 24, 2009

Hand2Hand Program to help local families

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

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 or call her directly at 317-835-2492.

Storage space for this program was generously donated by D and D’s Strictly Storage.

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.


· 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

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 or Susan Goodman at

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?