Time for the Little Things

December 20th, 2011 by

Here we are in the midst of the holiday season when everything is bustling around us. Normally I enjoy the gift buying, baking, cards and other holiday traditions. But this year has been different. Like so many families who have kids with disabilities, mental health issues, special healthcare needs, or some combination of all of the above, we’ve had some complications the last several weeks. One of my kiddos has been having an especially difficult time.

So, this Mama has been completely off kilter. Frankly I have found it difficult to find joy in the typical holiday traditions. Sometimes the traditions just seem so small when you have a child who is struggling. And yet, I have been trudging through most of them, determined to keep every ball in the air. I know that Christmas will be here on December 25th, ready or not.

Last weekend, we finally found a time to decorate our Christmas tree. The tree has been a tradition for us with each of our boys having a large box of collected ornaments that they hang. Now that our children are older, they seemed less enthusiastic about this event than in the past - but now that I think about it, perhaps that was a reflection of my own melancholy.

Just before the decorating was complete, Logan found our Peanuts holiday puzzle. Immediately, he wanted to put the puzzle together reminding me that we always do puzzles at Christmas. Every part me wanted to finish the decorating and move on to the next chore that needed completed before the end of the night. But, Logan, who is always determined, definitely had other ideas.

Before I knew it, we were camped out in the dining room sorting border pieces and generally having a great time. And that’s when it hit me – a reminder that this time of year isn’t about the gifts, the baking, the wrapping. It’s the moments we spend together with those we love.

The challenges at our house didn’t magically disappear while working on this puzzle. There weren’t any movie moments like fluffy white snow beginning to fall outside. But this Mama listened to a gentle reminder from my 12 year old boy. This week I’ll be taking the time for the little things that matter – the rest will take care of itself.

Jill Ginn is Manager of The Arc of Indiana’s The Arc Network



To Blog or Not to Blog

October 24th, 2011 by

I recently spent the day with a number of other people learning about how to create a personal blog. Our fearless leader, Cris Goode, author of GoodenessGracious.com, walked us through creating a name and setting up a personal blog on blogspot.com. We talked about details, blog etiquette, connecting with other bloggers in the blogging world and framing the message that we wish to share. My dashboard looks great. I’ve chosen a name and a background I really like.

Now comes the hard part — deciding whether I want to commit to nurturing my own personal blog and actually writing regular posts. I’ll admit part of me is really scared about the commitment. My due dates for blog entries for The Arc of Indiana regularly pop up on my calendar, sometimes with irritating frequency. I always struggle with what to write about, will anyone want to read it, and will I have something valuable to say?

During my day job I spend most of my day talking with others about programs and services for people who have developmental disabilities. I am comfortable talking to people I haven’t met and connecting with them often because of our shared experience of having children or siblings who have disabilities. It is the thought of having a writing commitment or deadline of sorts that causes me to pause. Even though my children sometimes remind each other that I was an English teacher in my former life, I have never really seen myself as a writer.

So, for now, I am going to take Cris’ suggestion and keep my blog conversational. Perhaps by sharing stories about my family and my work, I can find another way to connect with families including those who have someone with a disability. Or, perhaps more importantly, just find a way to connect with others.

If you care to join me on this blogging adventure you can find my blog at OnlyRoomForOnePrincess@blogspot.com.   Learn more about The Arc’s blogging project and find links to all of the bloggers, in ”Follow the Bloggers!” If you would like to join a network of bloggers who are blogging about disability issues or about individuals who have disabilities and/or their families, contact me at jginn@arcind.org.

Jill Ginn is The Arc of Indiana’s Manager of The Arc Network



Recognizing Gifts

August 25th, 2011 by

Recently, a board I am a part of spent the day in a workshop exploring our individual strengths.  Before the meeting we each received a copy of Tom Rath’s Strength Finder 2.0.  We all read the short book and took an online assessment.  The results identified each individual’s top 5 strengths/talents.

The idea behind this book and workshop was to figure out your strengths and talents and then find ways to maximize those talents in your personal and professional life.  This author encourages people to focus on their strengths instead of focusing on improving any possible shortcomings.   I think that most people would agree that finding a career or job that allows you to utilize and even maximize your strengths would likely lead to greater job satisfaction.

Participating in this workshop has lead me to a lot of thinking about the importance of finding everyone’s strengths and talents.  When we think about or interact with individuals who have disabilities, do we remember to focus on their strengths?  More importantly, if we DID focus on maximizing strengths, how much happier could the person be in their daily life?

I thought about this recently when I attended a quarterly meeting with a family.  Quarterly meetings are a lot like case conferences for adults who have disabilities.  A group of people get together to discuss the services and programs in place for an individual who has a disability.    We spent almost the entire time talking about incidents that had happened in the last 3 months.  Then we talked about goals for “John.”  As you might expect, the goals had a lot to do with working to overcome perceived shortcomings.  I can’t help but wonder how much happier John might be if we only focused on the things he is good at and helped him maximize those talents.

This week I am going to leave you with a challenge, whether you are a parent, a professional, a teacher or a sibling:  Figure out the talents of your loved one who happens to have a disability, and then spend more time focusing on that talent(s) than on the individual’s shortcomings.  Find a way to help that person tap into their talent.  I’m pretty sure you will both have a better week.

Jill Ginn is Manager of The Arc of Indiana’s The Arc Network



Acceptable Risk – My Lesson from the Autism NOW Summit

July 14th, 2011 by

A few weeks ago I had the pleasure of volunteering at the Autism NOW Midwest Regional Summit here in Indianapolis.  My favorite part, along with many other participants, was the breakout sessions where individuals and families were able to tell stories, talk and share their experiences.  My “stand out” moment of the summit occurred at one of these sessions.

For the first half of the session, adults who have disabilities shared their experiences with taking risks.  I heard my friend Melody tell her beautiful story of growing up in the rural south with a loving grandmother but little support or protection at school.  When Melody was a young adult, she bravely took a bus to Indianapolis to live with her beloved Aunt.  Now she has built a life with her husband, Joe, and is currently the president of Self Advocates of Indiana.  Another story was told by Chester, a young gentleman who happens to be blind.  He told of being determined to visit downtown in his community on his own.  He made that trip, but there were moments when he felt scared even though he was determined to succeed.  When his parents ask him how it went, he told them that everything was fine.  He wasn’t about to let his parents know how scared he had been.

Following these stories, conference participants had a chance to make comments and share their thoughts.  I will never forget one mom whose life was changed by listening to these stories about being given a chance to take a risk.  This mom, with tears in her eyes, told of longing for a baby and finally having one at a late age.  Her son faces daily challenges due to an Autism Spectrum Disorder.  She also shared that she had always felt it was her job to do everything she could for her son and always be there to protect him.  And then came the moment  - she turned to Melody, Chester and the others and said, “Thank you.  I now understand that my job is to allow my son to take risks so he can achieve his hopes and dreams.”

Taking risks doesn’t always turn out the way that we would hope.  Sometimes things don’t turn out the way that we planned.  But often we learn the most when we are allowed to take acceptable risks even if we don’t succeed.  As a parent I have been that mom spending so much time and energy trying to make everything okay for my son.  Ultimately, I try to remember what that mother so eloquently shared.  I need to be that parent who helps my son take acceptable risks so that he can learn and work toward his hopes and dreams.  After all, isn’t that what we all want?

Jill Ginn is The Arc of Indiana’s Manager of  The Arc Network



Navigating DDRS, Bulletins and Public Comment Periods

June 29th, 2011 by

BDDS, DDRS, FSSA, “The State” – Have you heard professionals, advocates, providers or other families connected to the world of disabilities use these acronyms or terms and wondered who or what they were talking about?  Have you felt like some unseen persons were making decisions about waivers, waiting lists and budgets but you weren’t really sure who was behind these decisions or how to access the information?

These letters and the generic term “the state” are used to collectively describe some of the state agencies that are responsible for services for people with disabilities in Indiana.  The overarching agency is FSSA – the Family and Social Services Administration.  One of the divisions of FSSA is DDRS – The Division of Disability and Rehabilitative Services (DDRS).

DDRS has several bureaus which manage services for individuals who have disabilities.  They include: 

  • The Bureau of Quality Improvement Services (BQIS)
  • The Bureau of Rehabilitation Services (BRS)
  • The Bureau of Developmental Disabilities Services (BDDS)
  • The Indiana Disability Determination Bureau (DDB)
  • First Steps (Early Intervention)

You can find more information about each of the FSSA divisions and DDRS bureaus at http://www.in.gov/fssa/.    

While you are visiting the website, don’t forget to sign up for DDRS email updates at http://www.in.gov/fssa/ddrs/3894.htm.  DDRS has been working to update all of their policies over the last several months.  They currently have an open comment period for several policies including the policy about waiting lists and eligibility determination for waivers.  You can fine the current draft policies available for comment and directions for giving your feedback at http://www.in.gov/fssa/ddrs/4205.htm. 

Please take the time to learn more about the proposed policies and provide your feedback.  Indiana needs to hear from families about what works and doesn’t work for them.

Jill Ginn is The Arc of Indiana’s Manager of The Arc Network



Will You be Medicaid Eligible When it is Finally Your Turn?

June 15th, 2011 by

I spoke with a mom this week who was understandably very stressed.  After waiting for years, her son was finally targeted for a Support Services Medicaid Waiver.  In other words, his name had come to the top of the waiting list and his family could begin the process of starting some greatly needed therapies and services.

However, as she began to work through the process, they hit a snag.  Her son isn’t eligible for Medicaid because he has assets that are more than the $1500 limit for Medicaid.  When her son was very young, his parents opened an IRA in his name intending to save money for his future.   Unfortunately, this account is considered his asset and is currently worth more than $1500.

Many people get confused about Medicaid eligibility with waivers because they think that income and assets don’t matter if a child is under age 18.  This is only partially true.  Senate Bill 30 allows the parent’s income and assets to not be counted when looking at Medicaid eligibility for a waiver for children under age 18.  HOWEVER, the income and assets of the person who will be receiving the waiver services will always be considered regardless of their age.  Those limits right now are 300% of SSI (or $2022/month) income and $1500 for assets/resources.

Fortunately, for the family that I spoke with this week, they should be able to move their son’s assets into a special needs trust like The Arc of Indiana Master Trust.  Assets held in a special needs trust are not counted when determining Medicaid eligibility.  Unfortunately, when decisions about resources have to be made quickly, there can be fees and penalties involved.  So, it is usually better to plan ahead and avoid a situation that might affect eligibility for Medicaid if your loved one is on a Medicaid waiver waiting list.

If you have questions about Medicaid eligibility with a waiver, please do not hesitate to call me at The Arc of Indiana.  If you would like to know more about The Arc of Indiana’s Master Trust, please contact our trust director, Melissa Justice.  We can both be reached at 317-977-2375 or 1-800-382-9100.

Jill Ginn is Manager of  The Arc Network, a program of The Arc of Indiana



Transitions

June 9th, 2011 by
The Ginn Family

The Ginn Family - Caleb, Jill, Jim, Logan and Tristan

As the parent of 3 teen/ tween age boys, early June is always a time of transitions in our house.  Right now we are transitioning to a new schedule no longer dictated by a school routine.  We are trying to figure out how to negotiate new activity schedules, getting along with siblings with whom we are spending significantly more time and managing a first experience with an online class.  All of these experiences have not been a piece of cake in the last several days, but I know that we will get everything figured out.

At The Arc of Indiana, we are wrapping up the second year of the current k grant project for The Arc Network and developing plans for the future.  Additionally, we are saying goodbye to one of our Family Advocates, Jennifer Akers, and wishing her well as she begins her journey with a new project with Family Voices.  To be honest, all of these transitions have me feeling a bit overwhelmed this afternoon.  Often too much change feels unsettling to all of us.

I often hear from families that transitions are the most difficult time for them.  Later this summer, Indiana will have a statewide transition forum on August 3 & 4, 2011 at the Sheraton Hotel and Suites in Indianapolis.  According to the organizers of the event, IIDC’s Center on Community and Careers, “The forum will be a combination of a conference, in which the latest information and practices will be shared, and a forum, giving special education administrators, teachers and other educational professionals time to network, identify needs, share ideas, problem-solve and promote successful transition solutions and opportunities. “  I know that as a parent, attending a transition event like this was the first time I really begin to see a vision for my son beyond his school years and special education.   I hope that if you have school age children you will consider attending this event to learn more about what options exist after high school.   Another great opportunity to learn and share this summer is the Autism NOW Midwest Regional Summit taking place in Indianapolis June 24-25.   

Knowledge and information is a powerful tool to fight those unsettled feelings that accompany change.   In times of transitions, whether it is a transition from school to summer or from school to adult services, please remember that there are people and organizations that can help.  Local support groups and family to family organizations like The Arc of Indiana, local Arc chapters, local support groups, Family Voices and ASK are only a few options.  If you need help connecting with a local or statewide organization, contact The Arc of Indiana at 317-977-2375 or via email us.  We’ll be happy to talk with you and hopefully share some information to get you headed in the right direction.

In the meantime, I’m off to put on my “Mom” hat and negotiate X-box turns, activities schedules and carpooling.

Jill Ginn is Manager of The Arc Network for The Arc of Indiana



The Power of Saying Thank You

October 20th, 2010 by

Last week, I had a wonderful day that started with a surprise presentation to my son’s special education teacher, Maggie Hammond.  Maggie, a teacher at Hamilton Southeastern High School, is the winner of The Arc of Indiana’s 2010 Education Award, which will be presented at The Arc’s 2010 Conference and Appreciation Luncheon on November 9th.  This award honors individuals who work to assure children with special needs receive a quality, inclusive education.  Maggie, who has an enviable energy level  and a contagious smile, is the guide who has helped my son navigate the difficult waters of high school.

Having a chance to thank Maggie in this way has led me to reflect on the importance of saying thank you to people in our lives.  During these very difficult times of unemployment, decreasing services and tight budgets, it can be very easy to overlook the positive things that are happening in our lives and the lives of our loved ones who have disabilities.  Raising a child who has a disability can be challenging, but I am certain that if you think about it, there may be several individuals who deserve a thank you for the supporting role they play.  Perhaps it is your spouse, your child’s teacher, a wonderful caregiver or supportive grandparents — or maybe it is all of these individuals.

The best part of thanking Maggie has been the happiness I have felt.  I am truly thrilled that she will get a little recognition for the work she takes in stride every day.  And I am especially glad that I have finally put into writing the gratitude I have felt about the ways she helps Caleb. 

Saying thank you to someone in your life doesn’t have to be an elaborate award.  It can be as simple as a few kind words, a hug or a heartfelt note.  My challenge to each of you today is to find someone in your life who makes everything just a little easier. Find a way to say thank you, and then sit back enjoy your own moment of happiness.

Jill Ginn
Manager of  The Arc Network
The Arc of Indiana