2016 Winter - DSAWM

DSAWM Offers Free Programs For Families Experiencing Down Syndrome

It’s time to renew your DSAWM membership! To better serve the Down syndrome community, DSAWM is offering free programs to for our families experiencing Down syndrome. Bike Camp, Cooking Capers, therapeutic playgroups, Shape Up, Aging With Down Syndrome, self-advocate leadership training, and so much more will be free with family membership! DSAWM offers membership levels for everyone. Our membership costs are kept low to ensure access for everyone. If you are experiencing financial difficulty, please contact our office at (616)956-3488 or april@dsawm.org about a membership dues waiver. To support DSAWM programs and services at a higher level, you may make an additional donation with your dues.

In-Area Family Membership – $25

Individuals with Down syndrome and their immediate family members who live in Allegan, Barry, Ionia, Kalamazoo, Kent, Mecosta, Montcalm, Muskegon, Newaygo, Oceana, Ottawa or Van Buren counties are eligible for this membership level. This membership includes FREE access to DSAWM’s programs, services, resources, and financial assistance! In-Area Family Members are the only voting members of DSAWM, selecting DSAWM Board of Directors and voting on issues presented at the annual meeting (each family casts one vote). To start or renew an In-Area Family Membership, click here.

Out-Of-Area Family Membership – $20

Individuals with Down syndrome and their immediate family members who live outside DSAWM’s twelve-county service area are eligible for this membership level. This membership includes FREE access to DSAWM’s programs, services and resources (Out-of-Area members do not qualify for financial assistance). To start or renew an Out-of-Area Family Membership, click here.

Community Member – FREE

Friends, neighbors, extended family and professionals are invited to join the DSAWM community and receive news about Down syndrome and information on upcoming programs by joining our mailing list. To join the DSAWM community, click here.

Supporter

Click here to make a donation to support West Michigan families experiencing Down syndrome.

DSAWM: West Michigan’s Down Syndrome Center

If you’ve stopped by DSAWM recently, you have witnessed our transformation in progress. What used to be an administrative office is becoming a welcoming, family-friendly center.

When DSAWM moved into the Masonic Center in downtown Grand Rapids a few years ago, it was to create a single destination for Down syndrome related programs and services. The commercial kitchen houses Cooking Capers, Shape Up is held on the 6th floor, and our drama classes and stage productions came to life in the auditorium. Now our first floor offices are getting a make-over to create a home for our families. There is still office space for staff and a conference room for meetings with community partners and committees. But in our first floor office space we are creating a few new spaces as well.

Parent Lounge

As soon as you enter DSAWM, you are welcomed by our parent lounge. Comfortable furniture, fresh coffee and tea, and wi-fi are provided for our families. Once it’s completed with a fresh coat of paint and photos of our members, the parent lounge will be a comfortable place for parent meetings or a little down time between appointments.

Therapy Playroom

Our new therapy playroom is welcoming and a fun location for our playgroups and programs for infants and children! We’ve already begun to receive therapeutic toys and classroom supplies from our wish list. Soon a coat of paint will brighten things up and friends from ACT will create a fun and inspiring wall mural.

Perhaps the most amazing part of this transformation is not the what, but the how. With a little ingenuity and a lot of generosity from the West Michigan community, DSAWM has spent nothing on this remodel. A coffee maker, toys and even furniture have all been donated from our wish list to create a welcoming environment for our families!

Watch your inbox – once our volunteer interior designer adds the finishing touches, DSAWM will hold a community Open House.

Rapid Runners Race for Mended Little Hearts

rr7 On September 24th, Mended Little Hearts of West Michigan (MLH-WM) held its second Funky Heart 5K in Alto. Heart defects are the most common and most deadly birth defect, affecting approximately 1 in 110 babies. Mended Little Hearts of West Michigan provides much-needed hope and support to families dealing with congenital heart defects through educational programs, social events and care bag programs. The Funky Heart 5K helps raise awareness about congenital heart defects (CHD) and support these programs.

Among those running were the DSAWM Rapid Runners. The group trained for three months to prepare for the race. In addition to their desire to become healthier and see how strong their bodies are, these runners all happen to have Down syndrome; nearly half of all babies born with Down syndrome also have a heart defect, so participating in the Funky Heart 5K was a meaningful way to mark the end of their training season. “We’re so excited that this inspirational group of runners chose the Funky Heart 5k as their race,” said Jennifer Dougherty, MLH-WM outreach coordinator. “Running a 5k is a great accomplishment, and we are very excited to share this experience with the Rapid Runners.”

The Rapid Runners program was created by the Down Syndrome Association of West Michigan (DSAWM) to support healthy lifestyle choices for teens and adults with Down syndrome, and dispel myths about the abilities of people with Down syndrome. The program was made possible by a grant from West Michigan based Gazelle Sports Foundation.

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Stop Restraint and Seclusion in Michigan Schools

Your help is urgently needed to protect Michigan students. Please support the bipartisan effort to push HB 5409-5418 through Michigan’s senate. These reforms make Michigan’s voluntary guidelines on seclusion and restraint into law, making them mandatory for public and private schools. These bills, for the most part, eliminate the use of restraint and inclusion. The exception being that emergency seclusion and restraint would still be allowed only in emergency situations to protect the safety of others – for example, restraining a student to break up a fight or remove a weapon or seclusion may occur in some situations such as in school suspension taking place inside a classroom. Additionally, spaces specific to seclusion are not allowed, but seclusion – when necessary – can take places in other school spaces, like classrooms. The bills promote the use of evidence-based and research-based practices, such as Positive Behavior Interventions and Supports used proactively to prevent situations that would lead to emergency seclusion or restraint. The goal is to eliminate the use of seclusion and restraint completely by addressing behavior problems long before they escalate to emergency situations.

The effort has been lead by Lt. Governor Brian Calley – an advocate for disability rights and father of three – including a daughter with Autism. “The practice of using restraints and seclusion or sensory deprivation on any kids, but I’ll say especially our most vulnerable populations, is cruel and inhumane,” the Lt. Governor told The Detroit News. “We need to give children the support they need and stop using archaic methods to control behavior,” said Calley.

These bills reflect a lot of hard work and consensus among legislators, educators, and disability rights service providers and advocates. With the support of the Lieutenant Governor, educators, and advocates the bills have been passed by the House of Representatives. But there are a limited number of session days left for the bill to clear the senate and be signed into law by Governor Snyder. The future of this legislation is uncertain and your voice needs to be heard.

Please act now to protect our children. Click here to contact your state senator and tell them that it is important to you that HB 5409-5418. You can phone or email, but phone calls tend to be most effective.

Life Insurance and Special Needs: Challenges and Solutions

Insuring Your Child with Special Needs

Because people with Down syndrome have a shorter life expectancy, parents must also prepare for the possibility that they may outlive their child. Although it is not pleasant to think about, having a life insurance policy can help cover funeral expenses.

Additionally, because some people with Down syndrome have health issues, it can be difficult to find affordable life insurance policies. One of the easiest ways to insure a child with special needs is to find an insurance company that offers a guaranteed issue child rider. With this type of rider, the parent is underwritten medically but the child is offered coverage as long as the parent is approved – there is no need for a medial assessment of the child. This rider will cover all of the insured parent’s children (under the age of 18 at the time of issue) until they reach the age of 25. Once the child reaches 25, they have the option to purchase a permanent plan for the child with no medical underwriting, allowing the coverage to last the lifetime of the insured child.

Ask your insurance agent about these types of policies. Need help finding a policy with a guaranteed child rider? Contact DSAWM for assistance.

Funding a Special Needs Trust with Life Insurance

Family members often experience a feeling of accomplishment when they sign their special needs trust (SNT), but signing documents is only the first step in reaching the ultimate goal of providing financial stability for their loved one with a disability. The family must also plan how to fund the trust to ensure it meets the future financial needs of their family member. Please note: in this case we are discussing 3rd party SNTs – these trusts are funded by assets not owned by the person with special needs. If this person has too many assets for a 3^rd party SNT, he or she (or the parents) may want to consider a 1^st party NST as the rules for the two are entirely different.

Now, some families can sufficiently fund their SNT simply by directing their assets into the trust through their estate plans. However, these families may still be concerned about future financial setbacks or long-term illnesses that may deplete their assets and reduce the funds available for the trust.

Other families may have significant retirement assets (examples: IRAs, 401(k) plans, and 403(b) accounts) that they are counting on to fund their SNTs. However, leaving retirement funds to an SNT can be a problem because income tax has not yet been paid on the money in the account. Therefore, when the account owner dies, the IRS will want the beneficiaries to withdraw the money quickly so that the taxes can be paid to the treasury. If the SNT is not structured correctly, the beneficiary may have to take all the money (into the SNT) in just a few years, putting the beneficiary in a higher income tax bracket and causing the distributions to be taxed at a higher rate. However, if the distributions can be stretched out over the expected lifetime of the beneficiary, a lower amount of income tax can be paid.

Finally, some families of more modest just don’t have the funds and assets to fund their SNT and need to explore other funding options.

Thankfully, life insurance has become a common answer to the question of how to fund an SNT. Even for those with larger estates, life insurance can be an attractive funding source; a life insurance policy ensures that even if there are financial setbacks in the future, there remains a source of assets for the SNT. Life insurance directed to an SNT can also provide flexibility to a family by providing adequately for the child with special needs while still allowing parents to direct other assets that may be inappropriate for a SNT to their other children.

Keep in mind, for those wishing to ensure that their assets are not lost no matter what happens to the grantor (the creator of the trust) – such as lawsuits, nursing home care, etc. – then an asset protection trust may be the best way to hold some portion of the family member’s assets, especially life insurance policies. These types of trusts are irrevocable, but can offer a surprising amount of flexibility.

Selecting A Plan to Fund SNTs

What type of life insurance might be appropriate for you? A qualified insurance broker should be able to help answer this question, but here are a few things to consider:

An SNT’s need for the insurance benefits is likely to be permanent, so term insurance is probably not appropriate. While term life insurance may offer lower premiums for a fixed period of time (10, 15 or 20 years for example), when that term expires, the premiums charged for renewal are often not affordable. Because the SNT will last for the life of the child with a disability, a whole life policy or universal life policy with a guaranteed death benefit is recommended. The premiums for these types of policies – while initially more expensive than the premiums for term policies – usually remain constant throughout the duration of the policy. Moreover, in many cases, the income that the policy produces by investing the premium payments can pay some or all of the premium, particularly after the policy has been in place for several years.

There is a potential problem with whole life insurance plans – they have cash value. Special Needs Attorney Charles Cottrel of The West Michigan Estate Planning Center gives an example: What if the insured party goes into a nursing home and needs Medicaid? “Medicaid will count the cash value [of the insurance policy] against the person, “explains Cottrel. “They will have to cash out the policy and spend down the money so then it is gone and will not be there for the intended beneficiary.” To avoid this potential problem, Cottrel suggests placing the life insurance policy into an irrevocable trust. If the policy is in an irrevocable trust for at least 5 years before needing Medicaid, it doesn’t need to be cashed out.

Many lawyers and insurance brokers recommend survivorship policies – also known as second-to-die policies – to fund SNTs. These policies cover two lives – typically (but not necessarily) the parents’ lives. The premiums on survivorship policies are lower than the premiums on a policy for a single person or on two individual policies because the policy only pays out after both insured people have died. This type of policy is particularly attractive if the parents are older, or if one of them has health problems.

Whatever type of insurance policy is chosen, the policy must name the trustee of the SNT, in his or her capacity as trustee, as beneficiary of the policy, rather than naming either the trust itself or the individual with special needs.

Life insurance is by no means the only way to fund an SNT, but it may be an appropriate way to do so for some families. As with any investment or strategy to benefit a person with special needs, it is helpful to consult with an experienced special needs attorney when considering using life insurance to fund an SNT. Need help with your special needs planning? Charles Cottrel at The West Michigan Estate Planning Center in Ada consulted on this article and would happy to speak with you. He can be reached at (616)723-8255.

Step Up for Down Syndrome Goes Wild in 2017

The 20th anniversary Step Up for Down Syndrome walk held Saturday, October 8th at Millennium Park was our highest earning walk in history! More than $150,000 was raised – far exceeding the initial goal of $125,000. This year, you set many records with 17 teams raising more than $1,000, four teams raising more than $10,000, and not one but two teams raising more than $15,000! Thank you to all of our hardworking families who shared Down syndrome with our community!

suds-2017-std We were also joined by Lt. Governor Brian Calley, who served as Grand Marshal. Calley was selected for the honor because of his work as a strong advocate for people with special needs, including his work in insurance and special education reform and leadership on the Mental Health and Wellness Commission, the 298 Workgroup, and MI Hidden Talent Tour. Calley also presented DSAWM with a State of Michigan proclamation signed by himself and Gov. Rick Snyder, officially recognizing October as Down Syndrome Awareness Month.

Click here to view pictures from 2016 Step Up for Down Syndrome.

This Step Up for Down Syndrome was special for another reason – This was a wonderful way to say goodbye to Millennium Park! Mark your calendars because Step Up for Down Syndrome is going through some WILD changes in 2017! Join us as we kick off Down Syndrome Awareness Month Saturday, September 30th, 2017 at John Ball Park & Zoo! This new location has ample parking, is easily accessible by public transportation, and allows our registered walkers to enjoy the zoo after the walk. We can’t wait to see you there!

2016 Step Up Sponsors

PLATINUM
Dan Vos Construction, Jandernoa Foundation, Hobart

GOLD
Die Cad Group, King Milling Company, Spectrum Health Foundation

SILVER
B&B Truck Equipment, Bethany Christian Services Global, EPS Security, Lakewood Construction, Inc., Steel Systems, Inc.

BRONZE
D&D Building, Land & Company, Hadley, Reeve’s Plastics

IN KIND DONATIONS
Celebration Entertainment, Costco Wholesale, Engelsma’s Apple Barn, EverKept, Fifth Third River Bank Run, Glitter Booth, Krispy Kreme Doughnuts, Ludwick’s Bakery, SpartanNash, Trader Joe’s

My Theater Story – Michael Amoros

Cast/Crew of Grand Rapids Civic Theatre Barefoot in the Park. Photo credit: Studio3Twenty

Six years ago I started classes and day camps at Grand Rapids Civic Theater (GRCT). This summer I did Senior Theater Arts Day Camp. That was really fun because we made our costumes and used real zombie make-up. I was in the real GRCT play, Barefoot in the Park, as a Santini Brother and crew member.

I have done musicals in middle school and high school. I was in Schoolhouse Rock Live Junior, and I was the Guitar Man in Bye Bye Birdie. I go to Drama Club meetings, and I am in the crew for the plays. For two summers I have also gone to The Young Americans day camp and performed in the show.

I was in all of the DSAWM plays, and being Peter Pan was my favorite. This summer I performed in Down With Improv with No Outlet Improv and our Peter Pan: Adventures In Neverland director, Miss Eirann. I donated the money I made to DSAWM.

This summer I was a theater assistant for GRCT’s Theater Arts Day Camp. I liked helping teach other kids to be on stage or backstage crew. I was also the assistant stage manager for the show, and I had fun telling cues to the crew. I like theater because I meet new cast members, do new things and have fun.

To My Daughter’s Heart Surgeon – Lindsey Kloeckner

to my daughter’s heart surgeon,

my daughter was born with Down syndrome.
and as many other children with that beautiful extra chromosome,
she was also born with a congenital heart defect.
a sizable ventricular septal defect,
more commonly known as a VSD.

we met with you prior to her surgery.
we wanted to interview you and ask all of our questions.
you humbly answered each one.
you took your time.
and acknowledged our mommy and daddy hearts.
acknowledged what a big decision this was for us.
and for our family.

you gave us your personal email address,

and encouraged us to email you with any additional questions that we had.
you told us that no question was too small,
and encouraged us to ask as many as we wanted.

we emailed you on three different occasions,
and you responded.
answering one of them within twenty minutes!

you calmed our frightened hearts.
and we scheduled the date.

and a week ago today,
you fixed our girl’s heart.
i know it was just a typical tuesday at the office for you.
but for us,
it was a monumental day.
one that we will remember for the rest of our lives.

and when you came into the family lounge,
to give us an update at the end of her surgery,
i asked if i could hug you.
i hope it didn’t make you feel uncomfortable.
it was the only way i could think to thank you in that moment.

you see,
you didn’t just fix my daughter’s heart,
but you fixed mine, too.

as it turns out,
i also have a heart defect.
but the hole in my heart is hidden.
it can’t be seen by the trained eye of a cardiologist.
or by the hands of a skilled heart surgeon, like yourself.

i didn’t know the defect was there until she was born.
i could feel it the first time i held her.
a hole in my heart.

a hole that kept a distance from people that were different than me.
a hole that made me look at other families like mine with a shred of pity.
and the thought, “oh that must be so hard.”

my defect can’t be fixed with a surgery like hers.
it can only be fixed with education.
and the understanding of others.

before my daughter was born,
i was nervous around people with disabilities.
i didn’t want to say the wrong thing.
or be offensive in anyway.

and over the last seven months,
she’s forced me to acknowledge my heart defect.
she has stitched it up.
day by day.

she is educating my ignorance,
and is healing my heart with shattered expectations.
and a smile that radiates pure joy.

so you see,
while you were fixing our daughter’s heart,
you were making sure that she could continue to fix mine.

her work isn’t done.
not in our family.
or in our community.

we know that the sky is the limit for our girl.
she is going to grown and thrive.
she is going to do great things.
and she will continue to help us heal our hearts.

because i know that lots of other people have holes in their hearts,
just like mine.
and together we can fix them.

so thank you.
thank you for fixing her heart.
for saving her life.

it is because of her,
that i now look at ‘typical families’ and think,
“you wish you had our girl.”

thank you.
thank you.
thank you.

lindsey-natalie

You can follow Lindsey’s journey on her blog, Things I’m Learning Now.