Saturday, December 12, 2009

Resources for Families with Kids with Special Needs

I've been meaning to write this post for quite some know, to be helpful instead of just whiney. I still hope that it is helpful to families out there, but I'm going to have to throw a little whining in here as well. I'm finally getting around to telling my beloved readers about these resources because it seems that I am about to engage in quite the battle to keep some of them, unfortunately. I'll keep you posted on that, but in the meantime, here's the background you will need to understand the blow by blow that I'm sure I'll share with you -- and, more importantly, a list of resources that have been invaluable to us. I hope you don't find yourself in a situation to need them, but if you do, here's a little help getting started with them. Some programs are specific to Tennessee, but many states have similar programs.

SSI, or supplemental security income, is more commonly known as disability payments. It is administered through the Social Security Administration. You must go -- in person, I believe -- to the SSA office to apply, and it's important to do it as soon as possible...and that's how we ended up at the SSA office the day after I came home from the hospital (what, 3 days post c-section? and lactating like crazy? good times.) for several hours. Many preemies (and probably all micropreemies) qualify for SSI based on birthweight. If they are larger preemies, they often have to demonstrate other developmental or medical issues to qualify. While a child is in the hospital, payments are made without regard to the family's assets or income, and they are at a standard $30 a month (presumably to pay for things like gas to the $30 for a month is laughable when it takes $15 for one roundtrip to your kid's hospital - but hey, $30 is $30!). Once you baby comes home, you have to (by law) contact your SSA office and notify them of a change in status. This is the point at which income and asset limitations kick in, and many families with modest incomes (like ours) do not receive payments.  However, you remain on the SSI rolls for 12 months after discontinuation of payments.  After that, even if you are disabled (according to their definitions) but have too much income or assets (like 2 cars), you are no longer classified as disabled.  Because, I guess, you can buy your way out of your disability.  (Notice the sarcasm?)  The reason that being considered disabled even when not receiving payments is important is that it qualifies you to receive TennCare.

For more info on SSI, visit the SSA website.

TennCare is Tennessee's Medicaid. Medicaid is nationally mandated but state-run; in Georgia it's PeachCare; in Kentucky, it's Passport; etc. Chances are your state has been making major cuts in their program. And that is not a good thing (at least not to vulnerable kids like Becca). But I digress. Slightly. Many people qualify for TennCare based on income, but others, like Becca, qualify/ied for TennCare based on disability, the thought (correctly) being that if one is disabled, private insurers will not cover you and/or you will max out your coverage rather quickly (remember, Becca is 17 months old and has already eaten up about 1/2 of her lifetime maximum coverage). If you do qualify for a group plan through a family member's employer (the kind that has to give you coverage if you qualify regardless of pre-existing conditions), like Becca does, TennCare becomes your secondary insurance. So, when we take Becca to only of roughly 16,043 doctors' appointments, we don't pay the $15 co-pay that our private insurance requires; TennCare covers it. When we max out our therapy benefit (say, if your adorable daughter is in 3 different therapies), TennCare kicks in to cover the rest (assuming it's through a doctor's prescription and your case manager approves it). TennCare has been a lifesaver for us. Yes, I know it is abused mightily by some people, but there are also many others, like our family, that honestly need it and use it honestly. Because kids like Becca qualify based on disability, you must first go to the SSA office and apply for SSI (see above) before coverage kicks in - this is why it is so important to go to the SSA office as soon as possible. Those first few days of Becca's life -- when she wasn't covered by TennCare -- cost us a bundle because coverage is not retroactive.  I don't think we had to go anywhere else to sign up for seems like the local SSA office handled it. John, pipe in here if you remember. (He did, after all, amazingly handle all of this stuff and still itemizes every single medical bill or EOB we get. Thank God I married a closet statistician.)

For more info on TennCare, visit their website.

W.I.C., or Women, Infants, and Children is the supplemental nutrition program that is also federally-mandated and state-run (I think).  Like TennCare, many folks (pregnant or breastfeeding women and kids under 6) qualify for WIC based on income, but some (like Becca) also qualify based on disability.  WIC used to only cover formula (or milk), juice, and cereal for kids, but they recently revamped and expanded the program so that you are able to purchase a (specific) variety of foods with your vouchers, including fresh fruits and veggies (up to $6 worth), whole grain bread, cheese, beans, eggs, and cereal.  Here's a picture of the WIC foods I purchased for Becca last month:

Unfortunately, Becca doesn't eat all of these foods, but I keep buying them in hopes that she will eventually eat them.  She actually did do quite well on last month's produce: she ate some pomegranate (it's hard to see in the picture) and a couple of bites of the sweet potato fries SuperDad made!  I've yet to bring myself to cook the bag of lentils in the center of the picture, but I can say that she's definitely gone through all of her WIC Cheerios, cheese, and eggs - and she even ate a couple of her WIC blueberries today!  Notice the variety of the food - and its nutrition.  The vouchers are very specific; for example, you have to buy bread or tortillas in a certain weight, and the first ingredient must be whole grain.  No Wonderbread for my Wonderbaby!  With our vouchers, I've been able to experiment a bit more with Becca's foods.  It's awfully hard to bring yourself to shell out a bunch of cash to try a new food with her when there is about a 90% that every little bit of it will end up on the floor and/or in the dogs' mouths.  WIC is definitely helping all three of us eat more healthily by changing my overall shopping habits.  I had a friend tell me recently that WIC is one of the few government programs that pays for itself, and I think this is why - because healthier foods and access to basic nutrition, along with the health education classes and appointments that are a part of the program make for better health of the participants - and lower TennCare expenses for taxpayers.  [Just for the record - most people who use these services are also taxpayers.  For example, as clergy, we pay higher taxes than most people (b/c we are self-employed), and we haven't stopped paying taxes just because Becca gets us/them rhetoric is dangerous in this regard.]  I don't have data to back this specific claim up, but the friend who shared this with me is quite trustworthy and generally not into big government I believe him.  And there is plenty of research on the health benefit of WIC, including this gem that stands out to me (wonder why?):

WIC during pregnancy reduces the rate of low birth weight babies by 25 percent and of very low birthweight  babies by 44 percent. (“Federal Investments Like WIC Can Produce Savings,” General Accounting Office,

The grocery vouchers through WIC are nice, but the real lifesaver for us is in their milk provision.  For most kids Becca's age, vouchers for whole milk would be included, but since Becca needs more nutrition than regular cow's milk, she has a prescription for "therapeutic formula" through her pediatrician and/or the NICU nutritionist (depending on who filled out this month's form).  First it was Neosure (Similac's formula for preemies), and then, for several months, we got vouchers for 15 packages of Pediasure, which has extra calories, protein, vitamins, minerals, etc.  That amount is a month's supply at 24 ounces a day (an ambitious goal for our little girl, but really what she needs to be getting calorie- and nutrient-wise).  With regular whole milk running about $0.02 an ounce and Pediasure costing about $0.22 an ounce, you can see that Itty Bitty's special diet would have been putting a very un-itty bitty dent in our bank account.  We were already getting some help from our favorite Abbott sales rep, Mr. Leo, but still...that sugar milk doesn't come cheap!  And this is why it's important for families with kids with special needs to have access to programs like WIC.  No kid is cheap, but our special kids tend to cost a pretty penny, even for their basic needs.  At our last NICU follow-up clinic appointment, they switched Becca to a new kind of milk with an even higher caloric content: Boost Kid Essentials 1.5.  (The 1.5 is for 1.5 calories per milliliter.  Yeah, that's thick stuff.)  This formula is not sold in stores, so it is delivered straight to the health department for us, and I pick it up monthly.  If we did have to buy it on our own, it would cost about $150 a month, plus shipping.

For more information on WIC, visit their website.  If your child needs special formula (such as Neosure for prematurity or Pediasure for failure to thrive), ask your pediatrician for a prescription and a therapeutic formula form.  WIC is handled through county health departments; that's where you will go for your initial sign-up and pick-up and recertification visits.

Tennessee Early Intervention Services

Miss Cindy is a saint.  Here she is helping Becca "paint" with strawberry syrup...and getting painted herself.  What a good sport!  She comes to our house once a week to work on all kinds of things.  We do a lot of fun physical-therapy-related exercises, practice feeding, work on sensory issues, and periodically evaluate Becca's development, gearing activities to Becca's needs at that time.  The actual content of an early interventionist's visit varies greatly with the child's needs, but in general, they help kids with special needs and/or delays reach their potential.  A lot of their work is training and educating parents about how we can encourage development.  Since so much of a child's development is determined by the time they turn 3, Early Intervention targets kids in these early years in hopes that they can help resolve many of their issues and help them close the gap between their abilities and those of their peers.  Really, though, it's about helping kids live up to their potential, whatever that may be.  Cindy has been great.  She is really creative and encouraging, and she's helped make having a child with special needs not as overwhelming.  And Becca just adores her.  EI can also help pay for therapies for kids without TennCare, so they may soon be our lifesaver in that respect as well!

Every state's Early Intervention program varies, and it's moronically not actually required that each state has a program.  (Services beginning at 3 are federally-mandated.  But the vast majority of development takes place before 3, and intervening early can make a dramatic difference.  I know it has with Becca.)  But most states (if not all) do have an EI program, though many are experiencing drastic funding cuts these days.  This is a shame for many reasons, not the least of which is that it's a fiscal mistake.  If kids like Becca get the help they need early on, many of them would be able to overcome their disabilities.  If they don't get the help they need in the first 3 years, there's a much greater chance that they would continue to be disabled into adulthood - and then require even more government spending through SSI, etc.  It's another one of those programs that tends to pay for itself in the long run.  So if you ever find yourself in a position to advocate for Early Intervention programs, trust me: they are so worth it.

For information on Tennessee's Early Intervention System, visit their website.  If you are looking for specifics on eligibility and/or making a referral, visit this page.  Anyone can make a referral, but they often come through a hospital social worker or case manager or the pediatrician's office.  But, again, anyone, including parents, can refer a child to TEIS, and they will then determine eligibility.  I can't emphasize enough just how helpful this program has been to us.  And it's free.  And they come to your home.  So if you think you might qualify, please, please, please look into it!

Children's Special Services
I actually don't know a lot about Children's Special Services, as we just recently signed up and haven't actually received any services, but here's what I do know.  They are diagnosis-based, which means that they can assist with needs related to specific diagnoses.  Becca is qualified under reflux (GERD), septo-optic dysplasia, hypothyroidism (which we think she's grown out of, but we'll see), and her absent septum pellucidum.  So far, we haven't had specific expenses directly related to these diagnoses (other than her Zantac for reflux, but that's been covered under TennCare), but I believe that if we did, they could help.  For example, if she needed glasses because of her septo-optic dysplasia, they could help cover them.  They may be able to help with her formula if we lose WIC, as well, which would be tremendous.

Here's a blurb about Children's Special Services.  In Sumner County, at least, they are a part of the county health department.

Family Support Services
This is another agency that I don't know much about, but I wanted to at least mention them so that parents in need would know to research them some more.  They provide one-time (each year, I believe) payments to families with kids with special needs for a specific need.  For example, one friend used their FSS payment to install a wheelchair ramp at the child's grandparent's home, where he often goes when mom is at work.  This program is geared toward children and adults who have severe disabilities who need special help in order to live with their families (instead of in some kind of institution).

For more information, visit their page on Tennessee's website.

Until Journey's End
Unlike the rest of these resources, Until Journey's End isn't government sponsored.  It's a private non-profit begun by some incredible people who have their own incredible journey.  From their website:

Who We Are

Our Mission and Vision
Until Journey's End is a 501(c)(3) nonprofit organization whose mission is to provide a support system to families living away from home to be with a loved one in medical crisis.
We strive to achieve our mission by:
  • PROVIDING families we serve with practical support such as care packages and financial relief
  • PARTNERING families we serve with other needed resources
  • PROMOTING service to and support of people in crisis
The vision of Until Journey's End is to provide a support system to every family who experiences the difficulty of caring and advocating for a loved one who receives medical treatment far from home.

Why We're Here

When God revealed to Jason and Tiffany Evans the son whom they were to adopt, they had no idea what the next several months held in store for them.

Isaac was born at 24 weeks gestation, weighing 1 pound, 8 ounces and measuring 13 inches long, in Canton, Ohio. Since he was unable to be transferred to a hospital in their hometown of Grand Rapids, Michigan, they decided that Tiffany and their toddler daughter, Hannah, would temporarily move to Ohio while Isaac continued to grow. Their stay in Ohio lasted almost 5 months and included the McKinley Grand Hotel, the home of a couple they'd never met before, and the Ronald McDonald House of Cleveland.
Throughout their stay in Ohio, many people, including people they'd never met, comforted and supported their family.

Because of the love, support and generosity of so many people and the desire of the Evans' to serve others, Until Journey's End was created.
The folks at Until Journey's End were great about supporting us throughout Becca's hospitalization.  The are proactive about finding folks who need help; they even found us on their own!  Every few weeks, they would send us a care package with helpful items, like toothbrushes, Target gift cards, and notes of encouragement.  Since they know what it's like to have a child in the hospital for an extended amount of time, they know that support often drops out after a few weeks, but they are there...wait for it...until journey's end.  While they often seek out families, you can also contact them through their website.
Tennessee Disability Pathfinder
This program helps connect families with services based on their needs.  It's not a service provider in itself, but more a navigator and a guide.  They have a searchable services database and trained staff that can help you make sense of it all.  Visit their website, or give them a call at 1-800-640-4636!
Okay, that's all I can think of for now.  If you have any questions or need help finding specific programs (even those not listed above), please leave me a comment with your e-mail address, and I'll be happy to get back with you and help you locate the information.  It can be really overwhelming at first, but once you are used to navigating the system, it gets easier - though not necessarily any less time-consuming!  You'll spend a lot of time on hold, but it's worth it!

1 comment:

  1. Nancy, that's an incredibly thorough and well-done blog post! You rock, chick!