Monday, August 11, 2014

In a Perfect World…. Back to School would be Easy.


In a perfect world, going back to school would be a breeze. Here are some resources to keep on hand in case you need them this school year:

1.     10 Things Teachers Should Know about Down syndrome: http://www.gillianmarchenko.com/10-things-a-teacher-should-know-about-down-syndrome/.

2.     Join the Inclusive Education Facebook page at: https://www.facebook.com/groups/131744783563993/.

3.     Join the IDEA and IEP tips Facebook page: IDEA and IEP Tips Facebook page: https://www.facebook.com/groups/IDEATIPS/.

4.     Find your way through Indiana’s Special Education Rules by downloading, Navigating the Course at: http://www.doe.in.gov/sites/default/files/specialed/navigatingthecourse.pdf.

5.     Dive in deeper by taking online courses through INSOURCE. Visit their online course library at:  http://training.insource.org/.

6.     With over a thousand apps now available to help individuals with special needs it has become increasingly difficult to find and choose the right special needs app. The Friendship Circle App Review gives you the ability to find the perfect special needs app for your child. http://www.friendshipcircle.org/apps/

7.     Think college isn’t for your son or daughter? You may rethink that after learning about postsecondary education programs available at: http://www.thinkcollege.net//

8.     Down Syndrome Education USA works with parents and teachers to improve education for children with Down syndrome. http://www.dseusa.org/en-us/.

9.     IPAS staff includes disability rights advocates and attorneys who have the authority to pursue appropriate legal and administrative remedies on behalf of people with disabilities, to ensure the enforcement of their constitutional and statutory rights:  http://www.in.gov/ipas/2452.htm.

10.  10 Ways to help your Child with Special Needs Make a positive Start to the new year: http://www.chicagoparent.com/magazines/special-parent/summer-2014/school-days.

11.  Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities. http://www.wrightslaw.com/

Also, please remember that Down Syndrome Indiana offers resources for parents and educational professionals to better serve children with Down syndrome. We offer a variety of publications and trainings to assist educators. Check out our resource page at: http://www.dsindiana.org/Educators.php.

Sending you love and good luck this year!

 

Lisa Wells, Executive Director

Monday, August 4, 2014

Ten Things Every Baby with Down syndrome wishes you knew


Dear Mom or Dad,

1.     I am a person first. Down syndrome does not define who I am or what I can grow up to become.

2.    I am happy with my life. I like who I am and I like the way I look. I am proud of who I am. You are proud of me too. If you haven’t gotten there yet, don’t worry, you will.

3.     Dancing is most likely going to be a big part of our life now.

4.    It is okay for me to have other friends with Down syndrome. It is okay for me to have friends that don’t have a disability too. I need a healthy social life.

5.    I may take longer to learn some things but I will pretty much want a boyfriend or girlfriend around the same time as the other kids at my school.

6.    Speaking of school, I can go to college if I choose. Believe in me. Challenge me. Include me. Don’t give up on my education.

7.    I know you want to protect me from anything that can harm me but sometimes I need to learn lessons the hard way. It is a part of growing up. Help me learn my lessons in a safe environment. When I want to do something, Let me try. If I can’t do it, I will figure that out on my own.

8.    I really need you to be my advocate. This world is still not as accepting of me as I wish it were. I will need you to stand up for me until I am viewed as an equal.

9.    I am a productive member of society. I want to give back to the community and I am depending on you to help me realize my strengths and showcase them. I deserve every opportunity to be my best self.

10.  I know that you are dedicating everything you have to making the world a better place for me. I also need you to take care of yourself. I need you to be the best you can be and set a positive example for how to live my life when I am your age. Connect with other parents that have a child with Down syndrome. You are part of a very special and lucky group of people now…

Thank you for being my parent. This is really going to be great!

Love,

 

Your child

Monday, July 28, 2014

In a Perfect World…. We would all stay positive amid life’s challenges.


I would like to tell you about a children’s book that I absolutely love and highly recommend. It is called, The Energy Bus for Kids. It is based on the must read adult version, The Energy Bus by Jon Gordon. The Energy Bus for Kids is a story about staying positive and overcoming life’s challenges. It helps kids gain skills to stay positive, resilient and to know what to do when bullied. This book is great for children and teens with Down syndrome and their siblings. It is also great for EVERYONE. Parents and Educators can download a teaching guide and journal to accompany the book at: http://energybuskids.com/resources.html. The Energy Bus for Kids is available through all major bookstores and online at: http://energybuskids.com/. 
 

Stay Positive,

 

Lisa Wells, Executive Director 

Monday, July 14, 2014

In a Perfect World…. All families would have access to world renowned speakers


 Amazing weekend. I don’t want it to be over!”

-        Jen
 

DSI Successfully Hosts the 2014 NDSC Convention- From July 11th through the 13th 3,300 guests gathered at the 2014 National Down Syndrome Congress Convention hosted by Down Syndrome Indiana. The convention brought in world renowned speakers and world class opportunities for families to connect. Indy’s own, Dr. Marilyn Bull was awarded the Pueschel-Tjossem Memorial Research Award,  Sure Steps Founder, Bernie Veldman was awarded the Exceptional Meritorious Service Award and Down Syndrome Indiana received the Convention Service Award. Several local DSI Self Advocates including: Angie Cain, Jessica Green, Tommy Sliva, Connor Stoesz, and Sarah Strohl were invited to present in front of a national audience!

The Down Syndrome Indiana office has additional hard copies of the convention compendium. They are available on a first come first serve basis. They may be picked up at the DSI office between the hours of 8:30AM to 2:30PM Monday thru Thursday of any week. For a $5.00 donation to cover the cost of postage, DSI will be happy to mail you a copy of the compendium.

DSI hopes that you will consider taking your 2015 family vacation in Phoenix, Arizona from June 26th to June 28th.
 

“It was uplifting and motivating and just wonderful.  I learned immensely and felt at home.”

-        Tricia

It is my pleasure to serve you,

 

Lisa Wells, Executive Director

Wednesday, July 9, 2014

In a Perfect World…. Everyone with a Disability, Anywhere in the World would have Rights.


Please contact Senator Dan Coats and encourage him to vote to ratify the Convention on the Rights of Persons with Disabilities (CRPD).
 

Seven Reasons to Support the CRPD
 

·       The Convention on the Rights of Persons with Disabilities (CRPD) is an international human rights treaty that will extend protections like those guaranteed by the Americans with Disabilities Act (ADA)  to millions of people with disabilities worldwide;
 

·       Ratifying the Convention on the Rights of Persons with Disabilities is good for American businesses; it will expand our access to international markets;
 

·       It does not matter what political party you belong to (if any), the Convention on the Rights of Persons with Disabilities crosses party lines, it is bipartisan;
 

·       Ratifying the Convention on the Rights of Persons with Disabilities will not change United States law nor put the United States under the control of the United Nations. The United States will still be a completely sovereign nation and our way of life will not change;
 

·       Ratifying the Convention on the Rights of Persons with disabilities is important for Americans with disabilities who live and work abroad- including veteran and military families;


·       There is wide support for the Convention on the Rights of Persons with Disabilities among veterans, people with disabilities, religious groups and businesses;
 

·       The United States must ratify the Convention on the Rights of Persons with Disabilities in order to participate in United Nations negotiations regarding the implementation of the treaty.
 

Take Action in Support of the CRPD
 

Did you know? Congressional staff members keep track of how many calls and e-mails they receive on different topics. When a bill comes up for a vote, Senators will check with their staff to find out how many constituents they have heard from either in support of or against a pending piece of legislation. That is why it is so important for us to make our voices heard on issues that are important to us. It can be uncomfortable to make a phone call, many people get nervous. However, there is information below that will help to make the process as smooth as possible for you whether you choose to call in, send an e-mail or forward a fax. No matter what method you choose, please stand up for the rights of persons with a disability wherever they are in the world.
 

Email Template
 

Simply copy and paste the text below (add your name and hometown) into this e-mail template:  http://www.coats.senate.gov/contact/.
 

“Dear Senator Coats,
 

I am writing to urge you to vote to ratify the Convention on the Rights of Persons with Disabilities (CRPD). CRPD is an international human rights treaty that promotes greater access to education, employment, community living and civic participation for people with disabilities worldwide. It is based on existing United States disability rights laws such as the Americans with Disabilities Act and Individuals with Disabilities Education Act.


The United States must ratify CRPD in order to participate in UN negotiations regarding its implementation and the setting of international accessibility standards. It is important for the US to be at the table during these negotiations, so that we can advocate for the policies which will work best for Americans with disabilities working or traveling abroad – for example, veterans, Paralympians who represent the United States at international events, and military families with overseas assignments who have children with disabilities. Being at the table will also allow us to find new markets for American products and expertise. American businesses lead the world in accessible product design, and ratifying CRPD would allow those businesses greater access to international markets.


Ratifying the Convention will not harm United States sovereignty or give the UN control over United States law. Ratification will increase the revenue of American companies and make the rest of the world more accessible to Americans with disabilities.
 

Nineteen veterans’ groups, 26 religious groups, 60 businesses, 750 disability organizations, the Chamber of Commerce, and a broad bipartisan coalition of current and former policymakers all support CRPD. So do many of your constituents, and, I hope, so will you.


Thank you for your time and attention on this important issue.
 

Sincerely,
[Your full name]
[Your hometown]

 

Phone call script


Call the Senator’s office at the number below and use the included script.

Call Senator Dan Coats’ Office at: (202) 224-5623


“Hi, I’m a constituent of Senator Coats and I’m calling with a comment.”

The front desk will either transfer you to constituent services, or ask you to give your comment.

“My name is ______ and my hometown is ______, Indiana. I’m calling to urge the Senator to vote to ratify the Convention on the Rights of Persons with Disabilities. Ratification will not harm U.S. sovereignty, but it will improve the lives of Americans with disabilities living abroad, and it will create new markets for American companies. Veterans, business, most major religions, and the Chamber of Commerce all support ratifying CRPD. This is a bipartisan issue and CRPD has the support of many respected and prominent Republicans, as well as many of your constituents. Thank you for your time.”

 

Dedicated to enhancing the lives of individuals with Down syndrome,

 

 

Lisa Wells

Tuesday, July 1, 2014

In a Perfect World….. Congress would pass the ABLE Act.


Please ask congress to pass the ABLE Act. Here are 10 Reasons why the ABLE Act should be passed:

1.     There shouldn’t need to be a law in place to allow people with a disability to save money for their future without losing much needed benefits.

2.     The ABLE Act has 437 co-sponsors in the House and Senate combined.

3.     Over 250,000 Americans agree that it is time to Pass the ABLE Act. Visit: http://www.change.org/petitions/congress-pass-the-able-act to add your voice.

4.     An ABLE account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.

5.     It will eliminate barriers to work and saving by preventing dollars saved through ABLE accounts from counting against an individual’s eligibility for any federal benefits program.

6.     The ABLE Act provides individuals with disabilities the same types of flexible savings tools that all other Americans have through college savings accounts, health savings accounts, and individual retirement accounts.

7.     The bill would supplement, but not supplant, benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources.

8.     The ABLE Act would amend Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities.

9.     The legislation also contains Medicaid fraud protection against abuse and a Medicaid pay-back provision when the beneficiary passes away.

10.  The bill aims to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation.

 

IT IS TIME TO GET THE ABLE ACT PASSED.  Make your voice heard! Visit: http://www.ndss.org/Advocacy/Legislative-Agenda/Creating-an-Economic-Future-for-Individuals-with-Down-Syndrome/Achieving-a-Better-of-Life-Experience-ABLE-Act/ for a list of ways that you can take action on this important issue.

 

 

Monday, June 23, 2014

In a Perfect World.... There would be no discrimination.




In a perfect world, there would be no discrimination; not against race, color, ethnicity, religion, gender, age, sexual affiliation or disability. The Americans with Disabilities Act and subsequent ruling called the Olmstead decision are steps that have helped the disability community move toward a world in which there is less discrimination.

 

Last Sunday, we celebrated the 15th Anniversary of the Olmstead decision. On June 22nd, 1999, the Supreme Court ruled that under the Americans with Disabilities Act (ADA), people with disabilities cannot be unnecessarily segregated and must receive services in the most integrated setting possible. For example, In the Americans with Disabilities Act of 1990 (ADA), Congress described the isolation and segregation of individuals with disabilities as a serious and pervasive form of discrimination. 42 U.S.C. § 12101(a)(2), (5). Title II of the ADA, which proscribes discrimination in the provision of public services, specifies, inter alia, that no qualified individual with a disability shall, “by reason of such disability,” be excluded from participation in, or be denied the benefits of, a public entity’s services, programs, or activities. §12132. Congress instructed the Attorney General to issue regulations implementing Title II’s discrimination proscription. See §12134(a). One such regulation, known as the “integration regulation,” requires a “public entity [to] administer … programs … in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” 28 CFR § 35.130(d). A further prescription, here called the “reasonable-modifications regulation,” requires public entities to “make reasonable modifications” to avoid “discrimination on the basis of disability,” but does not require measures that would “fundamentally alter” the nature of the entity’s programs. §35.130(b)(7).

 

Since Olmstead v. L.C., much progress has been made. Many individuals have successfully transitioned to community settings, but waiting lists for community services have grown considerably especially in Indiana and many individuals who would like to receive community services are not yet able to obtain them. Barriers facing those who want to live on their own still exist, such as, finding affordable, accessible housing and improving access to quality support and services tailored to each person's goals.

 

Down Syndrome Indiana is dedicated to enhancing the lives of individuals with Down syndrome and believes in the inclusion of individuals with Down syndrome in their community.  We are collaborating with many agencies throughout Central Indiana and the state to fight for the rights of individuals with Down syndrome to live independently and to not be discriminated against. Check out our vision for the future of individuals with Down syndrome and that of Down Syndrome Indiana at:  http://dsindiana-exectivedirector.blogspot.com/2013/12/in-2044-thirty-years-from-now-down.html.

 

It is my pleasure to serve you,

 

 

Lisa Wells Executive Director