Watch Out World, Here I Come

by Allie Cowden

What are some of your favorite memories of working for DSAWM?
I liked going out to lunch, like when we would go to Palatte Coffee & Art Shop together. I also liked doing a presentation at Winner’s Cup this May. It’s one of my favorite memories because I got to advocate. I also liked having fun with my friends and getting dressed up.

What were your favorite jobs?
My favorite jobs were filing, answering phones, typing newsletters, copying papers, and writing thank you cards.

What jobs did you not like to do?
Cleaning the toys, and that is the job to get done!

What advice would you give Victoria, Jen, and Nate?
My advice to Jennifer, Victoria, and Nate is to keep working hard and don’t give up in life. Keep moving forward in life.

How do you feel about graduating?
I feel excited about graduating and I am looking forward to working on my future goals with my CLS worker.

What are you doing now that you’ve graduated?
I work at Cookie Chicks, McDonald’s, and still come back to help out at the DSA. I am also working hard on my goals. I will be volunteering at Brody’s Be Cafe this fall.

What are you excited about for the future?
I want to keep doing public speaking and advocating more. I’m excited to work on my future goals with my CLS worker.

Hearts for Service

Lisa Glover

My name is Lisa Glover and I am from Grand Rapids, Michigan. My husband, Jay, and I just bought a house by Calvin College! I love pick-up volleyball, sunshine, spending time at our family’s cottage, and being with friends.

I work at David’s House Ministries as the Activities & Volunteer Coordinator. I started working at David’s House when I graduated high school as a Direct Care employee. David’s House Ministries is a group home for adults with disabilities and it has been an absolute blast working there. Some of my favorite parts of my job include taking individuals who live at David’s House to volunteer at Roots Brew Shop, participating in classes through Northoek Academy, and partnering with Arts In Motion.

I was a part of Young Life Capernaum for many years, which is a youth group for students with disabilities. Through Capernaum I was introduced to several DSAWM members. Since Capernaum serves students 26 and younger, a few of us decided to create a separate group for those who have aged out of Capernaum in Grand Rapids. Our group is called Living In Fullness Together (LIFT). We are a nonprofit organization who gathers twice a month to engage in social, spiritual, and community activities. It is through friendships made in Capernaum and LIFT that I have been invited to events with the DSA. My friends in the DSA have invited me to participate in Rapid Runners, the Step Up Walk, the Rock Your Socks Dance, and other large group events. What a great group of people!

I am thrilled to be serving on the board with the DSAWM. I would love to see the DSA partner with local group homes and offer activities and opportunities to older adults. I also hope to find creative ways to provide transportation for folks to attend programs and events. Mostly I am just looking forward to getting more involved with this amazing organization.

Florine Paul

Hi, my name is Florine Paul. I am a mother of seven children and a host of grandchildren whom I absolutely adore. Each holds a special place in my heart, so I must say I was pleasantly surprised to know that grandchildren cause your heart to grow in ways you could never have imagined, even as a parent, and it is to date my most cherished job.

I am also a retired school teacher and still occasionally sub for the Kentwood School District. I only sub for one school, the one I retired from, because I have found wonderful bonds in teaching the same students repeatedly. Prior to teaching, I worked for 18 years as a Special Education parapro, working with children with special needs. Though I worked with many different diagnoses over that 18 years, I have never had a student with Down syndrome.

Six years ago my granddaughter, Addison, was born with Down syndrome and while the diagnosis totally caught us all off guard, it is because of her that I have learned so much about trisomy 21. Our family is Addison’s tribe and we have learned how to support her in every way we can. But in all the support we have given her, she has taught us so much more, through her love, struggles, accomplishments, and victories. As I have become involved over the years in different projects and programs for her, I learned a lot about the DSA. Later, when my daughter Roshelle sat on the DSAWM board, I was stunned to learn about the many programs they were involved in to meet the needs of children with Down syndrome and educate the public. It is because of this that I wanted to be a part of the organization that helps other parents of children with Down syndrome learn steps to enrich the lives of their children and also makes the public aware of the amazing accomplishments made by individuals with Down syndrome.

Donor Night

Thank you for your continued support of the Down Syndrome Association of West Michigan (DSAWM). Your generous donations provide countless opportunities for people with Down syndrome in our community to live out their dreams and gain greater independence.

Your donations help fund all DSAWM programs, including Cooking Capers. This popular program invites our members into the kitchen where they are led by an experienced Dietician and Professor at Grand Valley State University and her students. Participants learn culinary terminology, cooking methods, and kitchen safety while preparing a delicious and healthy meal that is always gluten-free.

We invite you to join our members on Thursday, March 29th at 6:00pm to experience Cooking Capers first hand and partake in eating the finished products. This is a casual event with time to socialize, learn what else DSAWM has planned for 2018, and enjoy the meal that has been prepared.

Please RSVP by Thursday, March 22nd so we can have enough food prepared.

Online: Online Google Form

Email: Nate@dsawm.org

Phone: 616-956-3488

We look forward to an evening together celebrating the abilities of our members and thanking you for your continued dedication to empower individuals with Down syndrome and supporting the communities in which our members live, work, and play.

Dear Betsy DeVos | A mother’s message to the President’s pick for Education Secretary

Dear Ms. DeVos,

I know that you and your family care about children. I live and work in Grand Rapids, Michigan and the contributions of the DeVos family are evident throughout our community. That is why I’m reaching out to you today, one mother to another.

As a parent of a child with Down syndrome and special education advocate, it was difficult to hear you respond to Senator Kain’s questions about the Individuals with Disabilities Education Act (IDEA) with seemingly little understanding of the law that protects my son’s right to an education. Ms. DeVos, I’d like to explain, from my perspective, why so many of us have expressed concern over your response to the Senator’s questions regarding the IDEA. I hope this can be the start of a larger discussion about the benefits and protections for children that the Department of Education oversees through its implementation and enforcement of the IDEA.

The IDEA is the landmark civil rights law that protects the right of America’s children with disabilities to receive an adequate education. Note that I did not write “an exceptional education” as most parents would assume is the right of every child in our public school system. The Endrew F. case before the current Supreme Court is worth a read to see what kind of low bar we are actually talking about protecting. One day, we hope to have an education system that sets the same expectations for all students and provides the necessary supports to achieve that. The IDEA is the foundation for that future and is the only thing that stands between our children and an education with trivial to no benefit.

The law was first enacted as the Education for All Handicapped Children Act of 1975, and ensures access to a free appropriate public education for all disabled children. FAPE, as it is known, was not always the law of the land. Prior to 1975, it is estimated that nearly 1 million children with disabilities were excluded from school (Wright & Wright, 2014). In 1970, US schools educated only one in five students with disabilities and many states had laws that strictly excluded children with disabilities from school (US Department of Education, 2010). Because of the Education for All Handicapped Children Act, which later became the IDEA, schools have had to open their doors to students with disabilities and adhere to the concepts of FAPE, Least Restrictive Environment (LRE), high expectations and inclusion in the general education environment, to the maximum extent appropriate to receive federal funding through the IDEA.

Before this landmark legislation, there was no assumption that students with disabilities would even be allowed in the school building. I can’t imagine being told that my beautiful, funny, compassionate and smart son is not welcome in his neighborhood school. Can you imagine someone telling you that? Today, not only has access been dramatically improved, but so have outcomes. The 2004 reauthorization of the IDEA states,

“Almost 30 years of research and experience has demonstrated that the education of children with disabilities can be made more effective by having high expectations for such children and ensuring their access to the general education curriculum in the regular classroom, to the maximum extent possible, in order to meet developmental goals and, to the maximum extent possible, the challenging expectations that have been established for all children and be prepared to lead productive and independent adult lives, to the maximum extent possible (20USC §1400(c)(5)(A)(i) and (ii)).”

To further cite the department you now lead,

“…significant national progress has been made in ensuring equal access to education for all children with disabilities. During the 2007-08 school year, IDEA mandated programs and services were provided to more than 6 million children and youths with disabilities and more than 320,000 infants and toddlers with disabilities and their families” (US Department of Education, 2010).

In a study of nearly 3,000 preschoolers receiving early intervention through IDEA mandated programs, results indicated that there was an approximate reduction of 16 percent per year in the number of children receiving special education and related services over a two year period because they no longer required special education (US Department of Education, 2010). The IDEA has proven that early intervention works to benefit our most academically vulnerable children and help reduce the economic impact of educating those students throughout their educational career. It is also worth noting that, beyond school, the positive economic impact of a self-sufficient, independent adult in the community far outweighs the cost in the early years to provide special education and related services.

The IDEA also ensures that children with disabilities will be educated in their least restrictive environment (LRE). Before the protections of IDEA came into being, even when students with disabilities were allowed into the school, they were largely educated in segregated settings. This resulted in low expectations and poor outcomes for students with disabilities. There is an ever-growing mountain of research that demonstrates that educating students in the general education environment, with appropriate aids and services, is the most effective location for the majority of students with disabilities. The research shows that including students, to the maximum extent appropriate, in general education classrooms has several benefits – and not just for those with disabilities:

Fewer absences from school
Fewer referrals for disruptive behavior
Better outcomes after high school in the areas of employment and independent living (Wagner, Newman, Cameto, & Levine, 2006)
For students with high incidence disabilities, a larger percentage make gains in academics in the general education environment than in segregated, self-contained classrooms(Waldron, Cole, & Majd, 2001)
The presence of students with disabilities in a general education classroom resulted in better outcomes in reading and math for nondisabled students compared to their nondisabled peers in fully segregated environments (Waldron, Cole, & Majd, 2001)

Additionally, the protections of the IDEA extend to charter schools. I understand that you are a strong advocate for school choice and the charter school movement. I wonder how, without the protections of the IDEA, we can ensure equal access to students with disabilities? With the seemingly sole focus of administrators to get and keep student test scores high, it seems there would be a clear disincentive to welcome and educate students with disabilities – particularly those with intellectual disabilities – if the IDEA is not enforced in all schools receiving federal funding. I worry about a post-IDEA, charter school world where my son would be left to linger in a public school that receives little funding due to its low enrollment because all others who could, fled to schools where they were welcomed and my son was denied access because of his disability. The end result would surely be a return to a fully segregated school system for those with disabilities. To be clear, families like mine still must fight battles in our schools, even with the protections of the IDEA. However, without the strict enforcement of the IDEA, we would be setting our kids with disabilities back 40 years.

The IDEA doesn’t address all the barriers to a quality education for our children and it can be difficult to navigate, but it protects the most basic rights of our children to an education and the U.S. Secretary of Education should understand and strongly enforce it. I urge you to reconsider your comments made at your confirmation hearing. Please reach out to the large and welcoming disability community and engage us in this conversation. We want you to be successful, but many of us fear that your lack of experience in the world of special education paired with your advocacy for school of choice, vouchers and charter schools will result in our children being left behind again. It doesn’t have to be that way. Please work with us to ensure that the enforcement of the IDEA remains consistent and strong so that our children may continue to make the academic and social gains that are promised to every child in this country.

Respectfully yours,

Amanda Rhines

References

US Department of Education. (2010). Thirty-five Years of Progress in Educating Children With Disabilities Through IDEA. Alexandria, VA: ED Pubs, Education Publications Center.

Wagner, M., Newman, L., Cameto, R., & Levine, P. (2006). The Academic Achievement and Functional Performance of Youth with Disbilities: A Report from The National Longitudinal Transition Study-2 (NLTS@). Menlo Park, CA: SRI International.

Waldron, N., Cole, C., & Majd, M. (2001). The academic progress of students across inclusive and traditional settings: A two year Indiana inclusion study. Bloomington, IN: Indiana Institute on Disability & Community.

Wright, P. W., & Wright, P. D. (2014). Special Education Law, 2nd Edition. Harbor House Law Press.

Health Care is a Right, Not a Privilege – Amy Wigger

I recently had a conversation with someone outside of the Down syndrome community about health insurance and the lack of therapy benefits for children and adults with Down syndrome. In general, I appreciate an outside perspective. Most instances, after hearing a different point of view, I can examine the situation with a wider scope of thought. This conversation was no different.

Laura Hollander Photography

The conversation boiled down to costs and benefits. I know every single one of us wants to give our kids the best opportunities we possibly can. For kids with Down syndrome this can mean private therapy for OT, PT and speech therapy. In my family’s case, it’s speech therapy. Our almost four-year-old son, Owen, is all-out completely nonverbal. He has been through Early On speech therapy, private speech therapy (paid out of pocket) at an area college, and currently he receives speech therapy as part of his special education preschool program. While we see him progressing, it seems to be at a snail’s pace. We decided that to really help him to continue to learn how to speak, we would enroll him in private speech therapy through a center near our home that accepts our insurance. Here is where cost and benefits come into play.

When I called to confirm speech benefits for Owen, I heard news I didn’t expect. I had gone through the right channels and had our primary care physician write a prescription for speech under the codes that I had researched and confirmed were accepted. What the insurance company told me is that Owen could not be “rehabilitated,” and that my insurance company would only cover 60 consecutive days of therapy a year. This applied to OT, PT and speech therapy. When I questioned what they meant as far as Owen not being rehabilitated, they told me that unlike autism, which is covered and – in the insurance companies opinion – can be rehabilitated, Down syndrome cannot. After some choice words, I was instructed how to file an appeal and that was that.

I don’t think many of us, as parents, looked at our kiddos when they were born and imagined we would have to fight for them in so many ways. That an insurance company would weigh the cost and benefits of our kids. That they would look at our kids as not being able to be “rehabilitated.” That it wasn’t worth their money to try to help our kids progress and function and excel in society so that they can live healthy and fruitful lives. That we would shock an insurance company as we tried to explain that we don’t want to rehabilitate our kids – we would not trade their Down syndrome. We only want the best possible opportunities for them. The brain is an organ. If a person is born with a heart that doesn’t function at a certain level, insurance companies cover the cost of treatment for the heart as recommended by physicians. This should be the same for physician-prescribed therapy to improve the cognitive function of the brain!

Our kids and adults in our community who have Down syndrome are priceless. What they each contribute to the communities around them cannot be measured on a cost and benefit scale. Each and every one of them deserves and has a right to therapies that will help them excel throughout their lives. The possibilities are endless. But beyond the moral arguments there is this:

Cognitive health is an important piece of overall health.

That insurance companies are required by Michigan law to cover cognitive therapies for people with Autism shows that our legislators share this belief, so it should be true for all cognitive impairments.

Laura Hollander Photography

We are still fighting for speech therapy for Owen. We are also looking further into anything we can do as far as legislation goes, to change the laws that mandate what services are required to be covered. In an ideal world, the insurance companies would see the amazing potential that each person with Down syndrome has. Until that day, we will march on and make sure that Owen receives all the services he needs to excel, even if that means asking our elected representatives to protect his right to heath care.

Amy is a wife and mother of three beautiful kiddos. Paige is almost 9, Blake is 7 and Owen is almost 4 and blessed to have Down syndrome. Follow Amy’s journey on her blog They Rose Up.

Molly Wants to Teach Others To Be Healthy & Happy

I like to exercise everyday during the week – weekends, too. I like doing sqauts, sit-ups, push-ups, and other strength training things, too. I love going to Shape Up because I like to get in really good shape, get toned really good, and to eat healthy. I love to learn more about nutrition. I also love going to Planet Fitness to work out – it is tons of fun! I also love going to Rapid Runners – I love to do some running!

I want to be a fitness instructor. I am passionate about helping other people and myself to get fit and healthy! I love Tabitha (Shape-Up and Rapid Runners instructor) because she is totally nice and tries to help us get healthier. She is the best fitness teacher ever of my life! I love to have a nice, healthy lifestyle for other people and myself.