DSR Episode #26: 321Foundation & IEPs!

Just a catchup episode here to keep you up to date.
First we did a quick wrap up on World Down Syndrome Day (March 21).  Then we jumped into the newest and coolest Ds Organization – the 321Foundation.  This new organization was started by a group of families in Delaware – One of which was our very own Rick Kosmalski!  Go Rick and friends!  Check them out at their site and go and like them on Facebook.  Check out the pictures of their kickoff gala on WDSD and while you are there, buy a T-shirt!

Then we simply gave a ‘kid by kid’ update on the IEP process.

• Dexter (~3yrs) is just entering the school system.  Jason had their IEP but they are already in a private preschool and getting some private therapy so it was pretty low key.
• Luke (5 yrs) is ready to go to Kindergarten.  Mark is worried about inclusion and the fact that there is only one teacher for ~25 kids. Luke will likely need some in-class support (an aide).  When you want more than they are willing to give – that is when IEP meetings are tense.  Our plan – bring food! (we actually give more advice in the episode – you should listen…)
• Kayla (7 yrs) is in second grade – To Rick, the whole thing is dependent on the teacher – a good teacher means Kayla will have good year.  At this point the IEP is really a update from the previous year with improvements based on lessons learned.

Here are some lessons learned:

• In general as husbands, we take on the role of ‘bad cop.’
• It is best to ‘go in with a plan’ – in other words, know what services you want in advance.
• The teacher is crucial.
• If you feel that the situation/services set up is not working for your child, intervene IMMEDIATELY.  A ‘wait and see’ or ‘just give it a few months’ is just a bad idea.  You can quickly miss a half a year this way…

If you are looking for a good cause, our first ever DSR guest from waaay back in Episode 3, Dan Moreno, is running a 50K (that’s 31 miles!) in the mountains and desert(!) this weekend.  Show him some love and donate a few bucks to support Research Down Syndrome.
Sorry we haven’t had an episode in a while.  We have two great guests lined up, but we have had bad luck coordinating schedules.  We will keep the episodes coming – don’t worry…
Download Down Syndrome Radio, Episode #26.
Better yet…subscribe, rate us and leave a comment on iTunes!

National Down Syndrome Society named 2014 Brand of the Year

Washington, D.C. (March 6, 2013).

The National Down Syndrome Society (NDSS) has been recognized as the Brand of the Year by Harris Poll EquiTrend.  EquiTrend is an annual study that started in 1989, yet awards have only been given to the top brands since 2011 and started the Disability Non-Profit category in 2012. The award is given out based on the Brand Equity Index which measures an organizations reach in Familiarity, Quality and Intention (intention to purchase/use/watch/own/donate). “NDSS is deeply honored to be recognized by the Harris Poll as the brand of the year in the Disability Non-Profit category,” said NDSS President Jon Colman.  “This award is truly a high compliment demonstrating to all of us at NDSS and the Down syndrome community that we are making strides towards fulfilling our mission to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.”

Ten Biggest Mistakes Boards and Executives Make

by Jan Masaoka from Blue Avocado:
"To err is human," and as we all ruefully know, nonprofit board members and executive directors are typically human. Here are some of the biggest mistakes we make:
1. Falling in love with the executive director and letting love diminish critical thinking: Even if you have the world's greatest CEO, that CEO will benefit from your bringing your scrutiny and thinking to the organization's work and to his or her performance. Being in love is great, but bring up the issue of getting the dishes done.
2. Neglecting the recruitment of strong replacement board members: Let's face it, recruiting new board members isn't the most fun part of board work. For a micro-burst of motivation, think about this: what cool person would you like to meet . . . that you can contact using board recruitment as the excuse? (see Blue Ribbon Nominating Committee for Your Board)
3. Lacking a personal vision for the organization and the cause: it's not enough to support the organization's vision for itself and its work; what is your personal vision? For instance, what do you want to see occur for children with disabilities? For the national parks? For poor families? For the politics of the Middle East? If you let your personal vision inform your work on the organization's board, you will be a more strategic board member, and you'll inspire yourself. Try thinking about your personal vision for just 2 minutes.
4. Limiting your attention to your organization: A McKinsey poll of Fortune 1000 corporate boards found that board members felt they had enough (even too much) information about their companies, but hardly any information about the industries in which their companies compete. As nonprofit board members, we need information about trends in Alzheimer's care, about business models used by other legal aid societies, about how other Friends of Libraries are raising money from individuals. Sometimes we have this because we are clients, nonprofit leaders in the same field, or constituents of the cause, but if we don't, we need to insist on getting it.
5. Paying the executive either too much or little. In other words, not attending to how CEO salary affects the organization's future. If you pay too much, you can keep a semi-competent person in the job forever. If you pay too little, you will have a hard time recruiting a successor. (How Much to Pay the Executive Director)
6. Getting seduced by perks of board membership: If someone is paid significantly for being on the board (rare in nonprofits but common in foundations), or gets great perks (such as expensive gifts, meeting movie stars, getting free access to an organization-owned mountain lodge), that person will be very, very reluctant to rock the board or to contradict the CEO. As one devious new CEO put it, "I'm going to shower them with free stuff and by the end of the year they'll be eating out of my hand."

Okay, now: what are the biggest mistakes that executive directors make with their boards?