Helping Lead the Way
November 2, 2009
Several weeks ago, I received a phone call from Madeleine Will, vice president of Public Policy & director of the National Policy Center at National Down Syndrome Society requesting Central Ohio Down Syndrome Society’s help in securing the support of Ohio U.S. Senator Sherrod Brown for the Trisomy 21 Translational Research Parity Act that was just introduced into Congress.
Within days of receiving the request from NDSS, CODSS held direct discussions with Senator Brown’s office, and was able to secure not only Senator Brown’s support but his agreement to co-sponsor this very important bill. This is a tremendous first step for all individuals and families living with Down syndrome, but there is more work to be done.
That’s why NDSS has asked CODSS (the only Ds organization in Ohio) to sit on a small 5-person executive committee that will help guide strategy on enacting the Trisomy 21 Translational Research Parity Act. NDSS has also asked CODSS to lead the effort in Ohio to secure the support of the entire congressional delegation.
This is the real work, folks. This is the type of result and achievement that you demand of us as your organization.
We should all take pride in the fact that CODSS was directly responsible for Senator Brown co-sponsoring this bill, and huge kudos need to go to CODSS legislative lobbyist, Dean Fadel, who made this possible.
Very, very exciting times ahead.
A New Partnership
October 22, 2009
Last evening, Central Ohio Down Syndrome Society hosted a small reception for Dr. Michael Harpold, CEO of the Down Syndrome Research & Treatment Foundation.
We’re honored Michael flew in for this whirlwind one-day visit to meet specifically with CODSS board directors and member families, and to meet with our research partners at Nationwide Children’s Hospital and The Ohio State University, including: Drs. Dan Coury, Bill Smoyer, Eric Butter, Chris Timan, and Terry Elton.
Michael and I have talked extensively over these many months, and it is clear he shares our ideals, and hopes for the future. He also believes, just as we do, that the status-quo has been a disservice to our children with Ds, and that there must be more substantive progress and commitment in forwarding Ds research.
To this end, CODSS & DSRTF have agreed to work in partnership to increase awareness and support for break-through, evidence-based, cognitive research initiatives that will allow our children with Ds to lead meaningful and more independent lives.
This is truly an exciting time in Ds research, and you will hear much more in the coming months.
I invite you to learn more about the Down Syndrome Research & Treatment Foundation at www.dsrtf.org.
Judge Orders Partial Settlement of Doe v. State of Ohio
October 21, 2009
FROM THE OHIO COALITION FOR THE EDUCATION OF CHILDREN WITH DISABILITIES:
Ohio’s long standing lawsuit regarding the free, appropriate, public education (FAPE) of children with disabilities ages 3-21, received a partial settlement agreement on October 20, 2009.
The lawsuit, known as John Doe v. State of Ohio (which I wrote about in an earlier post here), has two parts: Part 1 challenged the way Ohio funds special education and related services. Part 2 challenged the Ohio Department of Education’s (ODE) procedures for implementing the Individuals with Disabilities Education Act (IDEA).
The lawsuit was brought by a plaintiff class of over 250,000 students with disabilities and their parents who want their children to receive FAPE. The partial settlement addresses the second part of the lawsuit which challenges the state’s procedures for implementing IDEA.
At hand are four matters:
1. The way ODE monitors local school districts and other agencies compliance with the IDEA.
2. The way ODE handles school districts’ requests for waivers of state standards controlling the delivery of special education services.
3. The way ODE operates its system for handling complaints about special education matters.
4. The way ODE corrects school districts’ failure to comply with the IDEA.
For over a year, the parties have been negotiating an agreement for a partial settlement which resolves the claims about the way ODE implements the federal law, IDEA. In a written agreement called a “Consent Order,” both parties have agreed to measures to the following measures that will apply to all children in Ohio who are receiving or who should be receiving special education and related services:
1. ODE to provide public involvement and access to information regarding its IDEA monitoring systems. Local school districts must post for public review local districts’ performance and hold open meetings to hear concerns.
2. ODE must provide protections and additional oversight when a waiver to the state requirements for class size are requested by schools. Parents in the district whose children would be affected by allowing the rules on class size, case load and other factors, must now be given notice of requests for such waivers before ODE can decide to give the waiver. Waivers cannot deny FAPE to affected students.
3. ODE must provide additional notice to parents/guardians of the complaint process and advocacy resources when a parent files a state level complaint. ODE is required to conduct a more thorough investigation of complaints which challenge the delivery of FAPE, or a school’s failure to implement due process hearings or state level review decisions, and the inappropriate use of restraints or seclusion. ODE must correct violations of the law in a timely manner.
4. ODE must enforce complaint timelines and mediation cannot delay these timelines.
5. ODE must enforce state and federal standards and require a district to correct failures within one year. Penalties may be applied for failure to correct.
This decision is final and the Consent Order is in effect and lasts for 2 years. To read the entire Consent Order, go to: www.olrs.gov.
CODSS Launches Free Group Physical Therapy Sessions for DS Families
October 10, 2009
At Central Ohio Down Syndrome Society, we have a responsibility to ensure children with Down syndrome have regular access to critical services that will help them lead independent and healthy lives. That’s why we’ve partnered with Nationwide Children’s Hospital to provide Ds families free group physical therapy sessions so children with Ds can grow stronger, more mobile and more confident. This is the first program of its kind for Ds families in central Ohio.
Here’s what parents are saying about CODSS’ free Group PT Program for Ds families:
“Lito -
Loved the opportunity to participate in the group PT session last week. Davis and I really enjoyed the therapist. She was gentle, but energetic; just what I need with my little machine…. Not only did we enjoy the program, but also meeting more families. I loved watching Davis play with Peter Lombardi – currently, Davis doesn’t have any DS peers. Thanks so much for bringing this opportunity to us. Looking forward to next month.”
- Chris White (& 3yr old, Davis)
“Lito…
The facility was great, well equipped, and Jen was really good with the kiddos. I liked the small group and all the space to let them roam. The obstacle course was a perfect idea for the group… Overall, a great experience. Thank you.
- Sally Patton (& 4yr old, Ryan)
A Darker Side of Twittering
September 23, 2009
Social media sites like Twitter have a fantastic capacity to serve a greater cause and influence thinking (read my previous post here). Twitter has proved to be a great equalizer, giving celebrity and commoner alike the opportunity to share in 140-characters or less their personal thoughts and insights to a global audience.
While Twitter is, for the most part, a vehicle for positive self expression, there are times it exposes with ruthless aplomb and probity the biases that fester in our social conscience.
We’ve come far, even over the last decade, in fostering greater compassion and acceptance for those with disabilities. Yet, it is clear we have so much further to go. The following are actual Twitter updates I have noted over the last several months.
- “think about it. The impotency of the sperm and egg, means a world full of kids with down syndrome, 3 hands, and 7 eyes. Half-robots…”
- “im kooler than that stupid down syndrome lookin kid “
- “he has down syndrome though…that’s what makes it so funny”
- “Just saw a lady with a vest with down syndrome on it, bad enough she has the disease but does she really need to advertise it?”
- “he’s not ashamed that he loved Twilight. It was hilarious and so much fun. Its like watching a kid with down syndrome run into a wall”
- “I am far from fugly u down syndrome extra chromosome lookin ass”
- “Im sitting at the mall cracking up like a retard. LOL”
wait till your married
I juss don’t understand why they all look the same? Oh well Prenatal Testing Impacting Down Syndrome Births in UK
September 5, 2009
Blogger ‘Welcome to Illinois‘ just posted this sobering statistic: Since screening tests were introduced in the United Kingdom, 13,076 prenatal diagnoses of Down syndrome in England and Wales resulted in termination.
Culled from data collected by the UK’s National Down Syndrome Cytogenic Register, the data also indicates that “in the same period an estimated 12,641 children were born with Down’s syndrome. But even if you assume a miscarriage rate of 2.8% (the average over the same period) that means that since it began, the UK’s prenatal screening programme has directly led to more terminations of children with Down’s syndrome than have been born with Down’s syndrome.”
No use rehashing his excellent post here, just click to read more.
Technology Comes to the CODSS Board Room (sort of)
August 30, 2009
Mindful of work and family schedules, lost time traveling to and from meetings, and the difficulty in coordinating
individual calendars, the CODSS Board of Directors recently held a regularly scheduled meeting entirely online via video chat. Using free online service provider, Tokbox.com, the quality of the audio and video was fantastic and near real-time. So much so that the Board unanimously approved holding all future CODSS board and executive committee meetings by online video conference.
Just another example of how CODSS is acting progressively and efficiently as an organization on behalf of its member families.
Now More Than Ever
August 23, 2009
Dear All,
What a year we’ve had!!
Cal, 2yrs old, and enjoying life at the Jersey Shore.
Throughout 2009, Kat and I have been busy raising awareness about life with Down syndrome and starting a new organization to support our son, Cal, and every child just like him.
For those of you who don’t know, earlier this year I established a new and entirely independent and unaffiliated 501(c)(3) not-for-profit to advance critical issue areas that have not been a focus of traditional support groups.
While there is good support and information available for infants and toddlers with Down syndrome and their families, there must be a greater strategic focus on enabling our children with Down syndrome so they can lead meaningful and more independent lives as adults.
This means aggressively advancing Down syndrome research, legislation and education.
The Central Ohio Down Syndrome Society has been operating for just five months. But in that time, we have made astonishing gains on behalf of the Down syndrome community, including:
- Central Ohio Down Syndrome Society is the first and only Down syndrome organization in the state to convene a statewide scientific advisory panel of geneticists, researchers, clinicians, and other physician scientists from Nationwide Children’s Hospital, The Ohio State University Medical Center, and other research institutions to review and recommend promising Down syndrome research initiatives for funding consideration;
- Central Ohio Down Syndrome Society is the first and only Down syndrome organization in the state to retain a veteran legislative lobbyist (who has a personal connection with Down syndrome), to directly lobby the Ohio General Assembly and governor’s office on behalf of Down syndrome individuals and their families. Our lobbyist will also forward the organization’s proactive legislative agenda that protects and advances the rights of families living with Down syndrome.
To read about these and other accomplishments we’ve achieved in less than 20-weeks, please click here.
Fall is the season for Down Syndrome Awareness Month (October). And this year, Kat and I have decided to focus all of our fundraising efforts to support Central Ohio Down Syndrome Society to keep the organization’s incredible momentum going!
Here is where our annual “ask” comes in.
To help enable the lives of people with Down syndrome, won’t you please consider supporting Central Ohio Down Syndrome Society and make a donation of your choice by following this safe and secure link. Should you be so inclined, you can donate in Cal’s honor by selecting our last name (“Ramirez”) in the drop-down list.
Or if you prefer, you can mail or fax your gift to us by using this convenient form.
The future depends on what we do in the present.
Please support Central Ohio Down Syndrome Society in our effort to educate through research, strengthen with advocacy, empower through achievement, and believe that together, we can make a difference.
Thank you for your continued care and concern in supporting Cal, our family, and all people with Down syndrome.
All our best,
Lito, Kat, Anabel, AJ, Cal, & Grammy
P.S. I know these are difficult economic times, and hard choices need to be made. Now more than ever, Central Ohio Down Syndrome Society needs your help as it continues aggressively advancing Down syndrome research, legislation and education. Make your donation today by following this safe and secure link.
National Down Syndrome Congress Point-of-View paper on health care reform and its impact on individuals and families living with Down
syndrome.
Lost in all the rancor over health care reform, is the fact that there is federal legislation pending in Congress that would support, assist, and recognize individuals with Down syndrome and other disabilities. Though near-term resolution to any of these bills is unlikely unless done through the framework of health care reform, here is a run down of current federal legislation that you should, at the very least, familiarize yourself with as they relate to DS individuals and families.
S.1810, Prenatally and Postnatally Diagnosed Conditions Awareness Act
Although signed into law by President Bush in October 2008, the law is worth bearing out here because it still lacks awareness among many in the larger DS community. More commonly known as the Kennedy-Brownback Bill (after the bill’s sponsors, Senators Ted Kennedy and Sam Brownback), this law strengthens the informed consent process around prenatal testing, and provides information and support services to parents receiving a positive diagnosis for Down syndrome or other genetic disorders. The law also creates a national clearinghouse of information for parents of children with disabilities, increases funding for peer-support groups, creates a national registry of families wishing to adopt children with disabilities, and develops education programs to help train health care providers in providing more balanced information and outcomes regarding the prenatal or post-natal diagnosis (read more here).S.493, The Achieving a Better Life Experience (ABLE) Act of 2009
Achieving a Better Life Experience Act of 2009 or the ABLE Act of 2009 – Amends the Internal Revenue Code to establish tax-exempt ABLE accounts for individuals with a disability to pay certain expenses, including expenses for education, housing, transportation, employment support, medical care, and certain life necessities. The bill also allows individual taxpayers a tax deduction, up to $2,000 per year, for contributions to an ABLE account (read more here).S.3297: Advancing America’s Priorities Act
In part, the bill provides for support services to women suffering from postpartum depression and who receive a positive diagnosis of Down syndrome or other prenatally or postnatally diagnosed conditions (read more here).S.CON.RES.22
A concurrent resolution expressing the sense of the Congress that the Citizens’ Stamp Advisory Committee should recommend to the Postmaster General that a commemorative postage stamp be issued to promote public awareness of Down syndrome (read more here).NDSC POV on Health Care Reform
Not a bill, but here is the National Down Syndrome Congress’ Point-of-View paper on health care reform and its impact on individuals and families living with Down syndrome (read more here).
Call for Information on Disabilities
August 5, 2009
Many thanks to our friend and fellow DS parent, Nancy Streets, for passing this along:
The National Council on Disability (NCD) is gathering public input for a study of emerging issues and trends affecting the lives of people with disabilities. Information gathered will be used in the development of NCD’s next annual progress report to the President and Congress, “National Disability Policy: A Progress Report,” which is required by Section 401(b) of the Rehabilitation Act of 1973, as amended.
The purpose of this public consultation is to gather input to inform NCD’s assessment of the status of the nation in achieving policies that guarantee equal opportunity for all individuals with disabilities, and empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.
If you would like to participate, the entire document and information is available here.
Responses need to be submitted to NCD by September 15, 2009.
