Health Insurance for Babies with Down Syndrome

Today Ryan McCostlin, a team member at Bernard Health, is going to share the Top 5 Health Insurance Tips for new parents of babies with Down syndrome.

When new moms and dads have a beautiful new baby, the questions can seem endless. What are the right foods? ...the right child care? ...do I need to buy Kidz Bop records, or is it okay if I play The Rolling Stones?

And while learning how to be a new parent can be a heck of a lot of fun, finding the right health insurance strategy... well... isn’t. . I happen to be someone who spends most of his time thinking about health insurance, and even I can admit that on the fun spectrum, shopping for health insurance can fall somewhere between tax audits and root canals.

That said, all parents spend time thinking about how to plan for expected and unexpected medical expenses. And for parents of babies with Down syndrome, there can be additional costs associated with neurological exams, cardiology exams, thyroid screening, etc. So while finding the right health insurance strategy might not be very much fun, it is important.

So, what should new parents of a baby with Down syndrome know as they begin to research health insurance options? Here are the top 5 tips:

1. Depending on your income and your state’s rules, your child may qualify for a government subsidized health insurance program called Medicaid. The name for the program varies from state-to-state... for example, it’s called MediCal in California and TennCare in Tennessee, but each state’s program is a version of the federal Medicaid program. If your annual income is too high to qualify for Medicaid in your state, your child may qualify for another government program called CHIP. To research government subsidized options in your state, you can click here.

2. If you have group health insurance through an employer, most employers have a 30 day window from the birth of your child to add him/her to your plan as a dependent. If you choose to add your child to your employer’s health plan, make sure you share your good news with your HR representative so you can fill out the appropriate paperwork!

3. If you don’t have access to insurance through your employer and you don’t qualify for a government program, you can still get coverage for your child through an individual health insurance plan. Child-only plans aren’t available in every state, but because of healthcare reform, children cannot be denied coverage by health insurance companies as long as at least one eligible parent also applies.

4. Consider enrolling in a Health Savings Account based health insurance plan if your employer offers one... and especially if you’re enrolling in an individual plan for your family. At first glance, it may seem like a co-pay based health insurance plan is a better option, but Health Savings Account based plans often have a true annual out-of-pocket limit on spending. After you meet your deductible, your child’s healthcare is free for the rest of the year. Families with lots of healthcare expenses often find that Health Savings Account based plans can help them come out ahead

5. Health insurance can be complicated, and it’s especially important for new parents of Down syndrome babies to consider all of the available options. If you need more help, there are several resources available who can provide guidance. As you consider where to seek additional help for your family, know that there are three basic categories of advisors:

First, each state has a State Health Insurance Program (SHIP) that can answer basic questions about health insurance eligibility. Advice from SHIP employees is free, and you can find your state’s SHIP contact information online.

Second, you can find a health insurance salesman who may be able to help you research private health plans. Health insurance salesman don’t charge you anything up front, but they get paid when they sell you an insurance policy.

Finally, many families find it helpful to work with fee-based health insurance advisors who, for a flat fee, can help you navigate the complexities of the individual health insurance market. This option is similar to a tax advisor or CPA who helps you prepare your taxes. While the flat fees vary, health insurance advisors usually don’t work on commission, so their only incentive is to help you get the right strategy in place for your new child.

More about the author: Ryan joined Bernard Health in 2010 to help families save time, save money, and get peace of mind as they consider affordable health insurance options. Through a network of retail stores, Bernard’s team of licensed, non-commissioned health insurance advisors provide face-to-face advice to families across the country. He earned a BS from Vanderbilt and an MBA from Yale. Ryan can be found on LinkedIn and Twitter.

Back in the Saddle

My blog “maternity leave” is officially over... and while I was away so much has been happening in your world. There have been lots of pregnancies, births, and adoptions, many new blogs and new blog addresses, new resources and goodies, and lots of new questions.

So where should I start? First off, if you are pregnant with a baby who has been diagnosed with Down syndrome, if you had or adopted a baby with Ds over the last 10 months or so, or if you have a new blog or blog changes, please email me so we can share your stories.

I have been reading many blogs, catching up with new little ones... and I am reminded of how much milestones seem to matter to us parents in the beginning. We are nervous and wondering how this new child will fare... we still believe that hitting those early marks is important, a sign of how well our baby will “function”. We still have so much to learn and so much to let go of.

With that in mind, I will repost the very first ds.mama post “Stage Not Age”. The link to the development journal has been updated, so if you have already read this post and could not get your copy, try again.

Stage Not Age

One of the first things to get over when you have a newborn with Down syndrome is looking for milestones based on your baby’s age. We have all heard stories about so-and-so’s baby who held his head up before the placenta was delivered and walked at six months old. Most of us have read some form of a What to Expect book and have a general idea of how old a baby is when certain things happen. Flush that knowledge from your mind and try not to pay too much attention to Mrs. So-and-so.

Babies with Down syndrome develop along the same path as a typical baby, meaning they reach most milestones in developmental order but they do it on their own schedule. They also have a lot more milestones to celebrate. Who knew there were a zillion sensory and gross-motor skills that are reached before a baby rolls over? You are going to need a whole bunch more cute stickers for that First Year Calendar than the measly 10 that came with it.

There is an amazingly detailed resource out there for setting expectations for your baby’s development and tracking your child’s progress from birth through about the first five years. It is called the The Developmental Journal for Babies and Children with Down Syndrome. It is put out by the English government program, Early Support. The material is provided for free online in pdf format. When you see the journal you’ll realize that this group has put a ton of research and effort into this project, and you will be thankful to the Brits for this contribution to your resource arsenal.

The journal includes the five areas of development (communication, social-emotional development, cognition and play, motor and sensory development, and self-help) and is categorized by 11 developmental steps. For each item, there are three columns to track your baby’s progress. There is also room for adding notes and questions.

Enjoy your baby's stages because while they sometimes seem like they'll last forever, they won't. And, make sure you go get your journal!

Purees, the First Foods

Stage two feeding is so exciting... it’s the introduction of real foods. Mushed up, watered down pureed foods, but cereals, fruits, and vegies just the same. Really, who isn’t totally psyched to run out and buy that first box of rice cereal and a couple teeny tiny jars of apples and sweet potatoes?

You don’t have to limit yourself to the baby food aisle though... you could make your own purees. It is easy and cheap. It is also healthier since the high heat processing in commercial baby food depletes the nutrient levels in those jarred foods. The best reason to make your own is because it tastes better and it tastes like real food... the real food your baby will be feeding herself in a few months.

A Few Guidelines
When introducing a new food, wait three to four days before introducing another. Having your baby eat the new food for three days will help you to figure out if your baby is going to react to it. Allergies will show up as a rash, hives, diarrhea, gas, congestion, or puffy, watery eyes.

Always cook vegies and fruits before you puree them, with the exception of bananas and avocados. Why? Because it makes the food easier for your baby to fully digest it.

What is a proper serving size for a baby? The first couple times you introduce a new food, do not give your baby more than two tablespoons per serving. Once you know your baby is not allergic to the food, you can feed her a serving somewhere between an 1/8 to a 1/4 cup, which is 2–4 tablespoons, or 1-2 ounces. However, if your baby turns away or acts disinterested, trust that she is done eating and do not push her to eat more. In this beginning phase of eating real food, it is more about exposure and practice rather than nutrition and calories. Your baby is still getting her nutritional and caloric needs met through nursing or bottle feeding.

To make some of these recipes it would be helpful to have a steamer basket and a food processor of some sort... a blender will work too.

5 Yummy First Purees
Baby Rice (15 servings, can freeze) B&T
1/4 cup white rice (short-grain like Basmati)
breastmilk or formula
Rinse the rice under cold water. Put it in a pan with just enough water to cover it. Bring it to a boil and stir it. Reduce the heat to low, cover the pan, and let it simmer for 20 minutes. Puree the rice in a blender with the breast/formula milk until smooth.

Pear Puree (2-3 servings, can freeze) B&T
1 small, ripe pear
2 tbsp. water
Wash, peel, core and cut up the pear. Put the pear chunks in a pan with the water and bring to a boil. Cook for about 5 minutes until the pear is tender. Cool and then puree using a little of the cooking liquid.

Carrot Puree (1-2 servings, can freeze) B&T
1 small carrot
1-2 tbsp water
Wash, peel (or scrape) and slice the carrot. Steam the carrot for 10 minutes. Cool and then puree in a blender with a little of the cooking water.

First Applesauce (8-10 servings, can freeze) MM
3 Medium sized Golden Delicious apples (or other low acid mild apples)
water as needed
Wash, core and slice apples but leave the skin on during cooking. Place slices in a steamer basket and set in a pot of already boiling/steaming water. Cover tightly and steam for 10-12 minutes (add more water as necessary). When the apples pierce easily they are done. Set them aside to cool and save the cooking water. Scrape the skins off and puree the apples with a tablespoon of cooking liquid for each apple.

Avocado Puree (1-2 servings, doesn’t freeze so you can eat the extras ;-) B&T
1/2 small avocado
Peel the avocado and remove the pit. Scoop out the flesh and cut out any dark spots or hard spots. Mash until it is smooth and creamy. Serve right away.

5 Combo Purees
Pear, Apple, and Banana Combo (4 servings, doesn’t freeze) HB
2 tbsp. pear puree (see above)
2 tbsp. apple puree (see above)
1/2 small ripe banana, mashed
Mix all three ingredients together and serve immediately.

Broccoli and Pea Puree (2-3 servings, can freeze but is better fresh) B&T
3 broccoli florets
small handful of fresh or frozen peas
a little breastmilk or formula
Steam the broccoli for 7-10 minutes, adding the peas 1 or 3 minutes (depending on if they are fresh or frozen) before broccoli is done. Cool and then puree in the processor, adding a little bit of breast/formula milk to counter any possible bitterness from the broccoli.

Butternut Squash and Pear (4 Servings, can freeze) HB
1 medium butternut squash
1 ripe pear
Peel the squash, cut it and take out the seeds. Chop it up and steam the pieces for about 12 minutes. Peel, core, and chop the pear. Add it to the steamer pot and cook for 5 minutes longer, or until the squash is tender. Puree in the processor.

Mashed Banana Flambe (2 servings, doesn’t freeze) HB
1 tsp. butter
1small banana, peeled and sliced
a pinch of cinnamon
2 tbsp orange juice, fresh if available
Melt the butter in a small skillet. Stir in the sliced banana, sprinkle with cinnamon and saute for 2 minutes. Pour in the orange juice and cook 2 minutes longer. Mash with a fork and serve once it has cooled enough.

Sweet Potatoes with Cinnamon (7 servings, can freeze) HB
1 sweet potato, peeled and cut into chunks
pinch of cinnamon
3 tbsp breastmilk or formula
Put sweet potato chunks in a pot and cover with water. Bring to a boil and simmer for about a half hour or until tender. Drain and puree in processor with cinnamon and breast/formula milk until smooth.

Baby Cookbooks
These recipes come from a few of my favorite baby cookbooks. I can’t fully endorse any of these books because in each there are some suggestions that I personally don’t agree with for babies with Down syndrome or typical kids, but every one of them has an array of super recipes and food ideas for little ones.

Mommy Made, Home Cooking for a Healthy Baby & Toddler by Martha and David Kimmel (MM)

The Healthy Baby Meal Planner by Annabel Karmel (HB)

Wholesome Meals for Babies & Toddlers, Parragon Books (B&T)

Good Intentions - Planning for the Future - Part 1

There are several parts of planning for your child’s future that I will be covering over the next couple months, ranging from writing your will to buying life insurance. I am going to start with the Letter of Intent because it is free and you can get it done with no professional help.

A letter of intent is a document written for future caregivers that describes your child and the life vision you have for him or her. (Older and adult children can and should help with the life vision but I am writing for the 0-24 month crowd, so you’ll be doing all the planning for now.)

What does this mean? Well, imagine that tomorrow someone else had to step into your shoes and take care of your baby. What routines should they know about, food allergies, preferences, dislikes? What is your bedtime routine? Does your baby love the bath? Is your child on medication? It is important to document these things.

And what about the future you envision? Should your teenager have an allowance? What type of discipline do you want to employ? Do you want to restrict your child from watching rated R movies? Do you want your child raised in a particular faith? Do you want your child to have a particular diet?

After researching several sources on the letter of intent, I have put together a template letter that you can use as the base for your child’s letter of intent. Download the .pdf file and use it as a guide, or email me for a text version of the file that will enable you to type into the document.

Keep in mind when you are writing the letter that you will be updating it every six months or so to keep it current. You’ll need to keep a completed copy of the letter with your important papers, as well as a working copy on your desk or computer.

It is hard to think about what life would be like for our children without us. However, if we don’t go through this exercise, we risk our children not benefitting from all the loving care we have planned for them in our hearts.

Your Turn
Is there something I forgot to put in the letter? Have you already written your letter of intent?

Picture Cards, Make Your Own

Language development... we’re all working toward it everyday with our children. We talk to them, sing to them, read to them, sign to them... But we know that reciprocation, our children being able to verbalize to us, comes later than their ability to understand language. So in the meantime we are teaching them other methods of communicating with us, using sign language and picture cards.

There are some good picture card resources out there. For free on the web, you can download and print cards from the See and Learn Language and Reading program. I like these cards because they use children with Down syndrome as models, the images are very realistic, and access to the cards is free. However, you still have printing costs, laminating costs, and the colors on the cards blend together too much, which I think might make object differentiation hard.

You could also purchase premade packs of First Word card sets. There are several packages to choose from, the colors are good but the sets are pricey and not all of the pictures in each set will be useful with every baby. Do I really care if my baby learns what a car key is?

To get the perfect set of picture cards for your baby, you have to make your own. It is easy to do and you will end up with a set of cards that is realistic, durable (chew-proof!), and specific to your baby’s world. When you make your own cards using your baby’s spoon, bottle, books, family members, etc., your baby can immediately recognize the object. Using cards from other sources means your baby has to be able to generalize that the picture of a cup is a representation of his cup. When your baby sees a picture of himself reading one of his books, it makes more sense than seeing a picture of just a random book cover.

All you need to get started is a camera, prints, and self-sealing lamination pouches.

Step 1. Take pictures of the objects your baby uses... his spoon and bowl, his bottle with milk in it, his cup, him reading his favorite book, you, his siblings, happy faces, sad faces, the family pet, toys, his crib... You can look at premade card sets to get ideas or jot down notes as you go through a couple days with your baby.

Step 2. Crop and print the pictures so that the object is the main thing in each picture.

Step 3. Laminate the pictures back to back so that each card has a front and back picture. Do not put pictures that could be offered as choices in the same pouch. You want your baby to be able to see both choices at the same time so that he can point to the card that has the object he wants.

Step 4. Show your baby the appropriate card prior to doing whatever is on the card. Before you know it, your baby will realize that the card represents the upcoming action or activity. Long before he can say he prefers an apple to a banana, he can choose the picture of an apple at snack time.

You can also use the cards when you are reading to help your child with generalization. When you get to a picture of a ball in the story, show your baby the picture of his ball. It is important that you also say and sign the word when you use pictures. Picture cards are a resource for enhancing language development and facilitating communication, not a total replacement for signing/speaking.

Your Turn
What picture cards are you using with you baby? Let me know and I will add a link here to your post about it.

Lori: Special Connection Homeschool: Introducing Reading with Sight Words
Perplexing Situation: Friday Organization

What If?

by guest blogger ch

Our daughter, LC, is adopted. My husband and I stood in the delivery room and watched her birth. We were left speechless by the honor of becoming her parents in a way that felt as if we had been tangibly touched by the hand of God.

(What if adoption didn’t ask a birth mother to say, "Take this from me" but, instead whispered, "Share this child with me"?)


The truth is, we adopted a baby that didn’t need a mom. LC has a mother. And, believe me, she has earned the title. When she learned of her unborn baby’s diagnosis of Down syndrome and multiple heart defects early in her pregnancy, she did her research and attended numerous appointments with a variety of specialists to ensure this child would have every possible chance at a healthy birth.

For over 200 mornings she was kicked awake by little feet that would one day run through someone else's home. Month after month, she saw doctors and endured procedures to care for a baby’s heart she would entrust to someone else's keeping. For so many weeks, she sacrificed relationships, social acceptance, and convenience to shelter a tiny body. Night after night, she prayed for her child, and for the strength she would need to say good bye.

(What if adoption wasn’t about breaking ties but about building teams?)

People immediately become uneasy when I acknowledge LC’s birth mother. They rush to assure me that I am LC's mom...as if the two were mutually exclusive. I am, indeed, LC's mom and quite proud to be so! I am equally honored to have been invited to assume that role by a woman whose humor, courage, and faith both humble and astound me.

Because of this woman’s choice, LC was blessed with life. She will never feel that she was baby with an undesirable diagnosis —abandoned and found by new parents. LC will know she was unceasingly loved by a multitude of people from the moment each one learned of her impending arrival. She will know that the love she deserves required more than a single person could provide. She will also know that love didn’t require a relationship to be broken, just expanded. We were chosen as a gift to LC by someone who loved her, and continues to do so.

(What if the arms reaching out to adopt a child ensured a bestowing mother would never have to let go?)

God didn’t bring LC to us. Instead, He brought us to LC’s mother. He didn’t send us because we were equipped with amazing faith or infallible parenting skills, nor because we needed a baby. He sent us because He had heard the sound of a mother’s heart breaking.

We didn’t go to create a new family, but to join an existing one. A baby was coming who would need the prayers and ferocious love of more than a few to bring her through the trials she would face in this world. Our reaching arms weren’t fixed to take away. God intended them to hold something together and LC’s mother was brave enough to open her own, and invite us in.

(What if adoption was less about abandonment and more about abundance?)

Our near-daily chats with LC’s mother don’t lessen LC’s recognition of my husband and I as her parents. The presence of a Kellymom in LC’s life does not rob me of my own Momma title. The acknowledgment of our shared parenting role doesn’t compromise the impact my husband and I have on LC’s life, or call into question to whom she belongs. LC belongs to a God who proves it every day through the miracles He works in and through her.

She has been entrusted to us for now and we have been called to continue a good work begun in her long before she reached our hearts or arms. She is both the result of a promise kept to us by God and a reminder of the promise we have vowed to keep.

Inside LC’s baby book, beside a picture of her mother, are lines from the poem, "A Valediction: Forbidding Mourning" by John Donne.

Our two souls therefore, which are one,
Though I must go, endure not yet
A breach, but an expansion,
Like gold to aery thinness beat.

(What if adoption was about creating a blended family to celebrate and share life?)

LC is not the claimed fragment of a mother’s broken heart tossed aside. She is the unifying rhythm of a group of people who have unexpectedly found themselves sharing a single heartbeat. We are a family made possible by a mother’s courageous faith and the grace of an infinitely loving God. We are a family held together by a love like spun gold, wrapping us up and increasing our value to more than we would have ever been alone. There is no question that agonizing sacrifices have been asked of each of us along the way, but also no doubt that they have added to the luster and shine of the treasure we now find ourselves sharing.

-- ch


How to Share the Love

If you are pregnant with a baby that has been diagnosed with Down syndrome and would like to know more about sharing this gift of a child with another family, please contact Adoption STAR. They can assist you with finding a waiting family with whom to share your precious child.

DS Bloggers at Your Service

If you’ve just had a baby, you may not have time to hang out on the web and leisurely search for blogs about Down syndrome.

Me, well, I did have time on my hands as I waited for my daughter to get through 16 weeks in the hospital, but it never occurred to me that there might be a Down syndrome blogging community. We did have lots of caring friends and strangers dropping off phone numbers for local Down syndrome groups and families willing to be contacted. But, being in the hospital everyday, we didn’t have the energy or the free time for face-to-face relationships.

Once we got home, I felt very much alone. Like any Internet junkie, I hit the web. And there she was, Ella Grace with the Pretty Face dancing around in a video. I sat mesmerized watching this little girl with Down syndrome shaking her booty. I was so encouraged by it that I made my husband watch it too.

After clicking around her blogroll and many others, I came across Jaxson’s Fight. When I spotted his hospital picture in the upper left of the blog header, I knew we were not alone with the agony we had faced in those 16 weeks of hospitalization.

Then I found Little Miss E and saw the Traveling Afghan project get off the ground. I realized that together we can turn this online community into a family of sorts where we can share goodies, information, or even vacation visits.

And so, Down Syndrome New Mama has to have a blogroll... right? Of course it does! I could go out and scoop you guys up, and list you willy-nilly but I thought it would be nicer to categorize the blogs. That way, newcomers can find blogs where they share similar experiences, and blogs where they don’t.

Here are the categories. (If your blog fits into more than one category, pick your preference.)

The Designer Genes Club
If your blog doesn’t fit in any of the following categories, or if it does but you never post about anything related to it, please choose this blogroll.

Double Trouble and Twice the Blessing
If you have more than one child with Down syndrome please pick this blogroll.

It’s a Small World After All
This category is for families with ethnically diverse backgrounds and those raising children with Down syndrome across the globe.

Sweethearts & Fighters
If your child has gone through (or is facing) heart surgery or any other major surgery, please pick this blogroll. This list is also for those out there who are fighting various medical issues on an ongoing basis.

The Chosen Ones
If you adopted or are in the process of adopting a child with Down syndrome, please pick this blogroll.

The Future Is Now
If you are an adult or a teen blogger with Down syndrome, please choose this category. Also pick this blogroll if you are a parent or sibling who blogs on behalf of a teenager or an adult with Ds.

Projects & Resources
Blogs that are dedicated to projects, like the Traveling Afghan project, or are a Down syndrome resource blog, like Down Syndrome New Mama, should choose this blogroll.

How You Get Listed
You can either put your blog address and selected category in a comment on this post, or email it to me. My email address is available in my profile. If your blog or your baby is a newborn (or newly adopted), please let me know so that I can highlight you with a "birth" announcement.

Ok guys, bring ‘em on!

Stage Not Age

One of the first things to get over when you have a newborn with Down syndrome is looking for milestones based on your baby’s age. We have all heard stories about so-and-so’s baby who held his head up before the placenta was delivered and walked at six months old. Most of us have read some form of a What to Expect book and have a general idea of how old a baby is when certain things happen. Flush that knowledge from your mind and try not to pay too much attention to Mrs. So-and-so.

Babies with Down syndrome develop along the same path as a typical baby, meaning they reach most milestones in developmental order but they do it on their own schedule. They also have a lot more milestones to celebrate. Who knew there were a zillion sensory and gross-motor skills that are reached before a baby rolls over? You are going to need a whole bunch more cute stickers for that First Year Calendar than the measly 10 that came with it.

There is an amazingly detailed resource out there for setting expectations for your baby’s development and tracking your child’s progress from birth through about the first five years. It is called the The Developmental Journal for Babies and Children with Down Syndrome. It is put out by the English government program, Early Support. The material is provided for free online in pdf format. The hardcopy journal can be ordered and shipped free anywhere in the UK just by requesting it. I had my copy shipped to a friend’s mother and got it once my friend returned to the US after a visit home to England. When you see the journal you’ll realize that this group has put a ton of research and effort into this project, and you will be thankful to the Brits for this contribution to your resource arsenal.

The journal includes the five areas of development (communication, social-emotional development, cognition and play, motor and sensory development, and self-help) and is categorized by 11 developmental steps. For each item, there are three columns to track your baby’s progress. There is also room for adding notes and questions.

Enjoy your baby's stages because while they sometimes seem like they'll last forever, they won't. And, make sure you go get your journal!