Special Needs Children

Okay, I am waiting on my sister to respond to me so that I can post her answers. My sister was in her 5th month of pregnancy when she found out after an amnio that her son was going to be born with mulitple birth defects. His diagnosis was a hole in his heart (Hypo-Plastic Left Heart Syndrome), a cleft lip and palate, and numerous other problems. He is now almost 10 years old and has undergone 3 open heart surgeries along with about 20-25 other surgeries. He is doing very well.

The one thing that I want to share with you prior to her response is that she was a stay at home mom as well so that she could be there to care for her special needs child. He received SSN and was on Medicaid. My sister went back to work about a year and a half ago and just this past January decided to supplement his insurance by adding him to her insurance at work. Well, as soon as they discovered that he had other insurance, they cancelled him. She asked what she could do to get him back on Medicaid and they said she would have to quit her job. She thought she was doing the right thing and it ended up coming back to bite her. So please whatever you do, do not make quick decisions without thinking it through or speaking to someone about it first before you are in a position like my sister where her insurance went from a small fee to about $1000 per month.

One other thing, my sister did a lot of research before my nephew was born. She knew what she was going to be faced with prior to his birth. She actually also met another mother prior to giving birth who also had a child born with the same problems. Having a support system is what is going to keep you going and moving forward.

I feel for you and I am sending my thoughts and prayers your way. I wish you the best of luck. Think positive for you, your baby and your family!!!! You all need each other right now.

(As soon as my sister responds, I will post her response!!!)

C., I don't have any advice, but I do want to tell you that you and your daughter and your family are in my prayers. May God give you the answers you need and may he bless your little girl with happiness and health. Good luck and God Bless.

Congratulations!!

As a mom of 4 kids and 2 of them are special needs, I can't offer anymore advice than what has already been given to you.

I know it will be hard sometimes but you will manage. Take time off for yourself as well. Take advantage of family, friends who offer to help. Don't feel you have to do it all alone.

I can say that we do not have medicaid, SSI, or any other help. I just lost WIC today since my husband paycheck was higher for a couple of weeks due to alot of work. We are struggling so if you do qualify take it, it's there for you to use.

God Bless your little one who is truely an angel.

C. -

Congratulations on your pregnancy!

I am thankful that you are already thinking ahead. While no one ever goes into pregnancy desiring a child with special needs, they can offer so much love, learning, and compassion to one's life that you may have never known before. You may feel all alone at times - like you and your family are the only ones who will face your fears, stressors, joys... but you are not alone.

Call 'The Belle Center' - p: ###-###-#### (administration office) is a good place to start. Here's their web address to:
http://www.bellecenter.com/

I used to work with them as a Speech-Language Pathologist. They would be a great place to start for many reasons - not only for therapy, but also as a great support for families with children with special needs. They will be a great resource for you to get started with your journey. They even have Sib-shops - groups that meet for siblings of children with special needs -which can help your other little girls with all of the new changes on the horizon.

As for services offered:
- Start with First Steps - they can provide treatment to children from birth - 3 years of age in nearly ALL aspects of development - physical (gross motor), occupational (feeding, fine motor), speech-language (spoken word, sign langauge, picture communication), developmental (learning concepts), etc. Belle Center is a First Steps provider, meaning that they provide these services as a 'subcontractor'. There are many other organizations that do as well, I'm just familiar with BC.
- Around 2 1/2 years of age, your First Steps provider/administrator can help with the transition to Early Childhood Special Education (offered by your school district), which will see your daughter from 3-5 years of age. You will have IEP (Individualized Education Plan) meetings to decide on educational goals for your daughter to work on during therapy.
- After that, if she continues to need intervention, she will enter the Special Education program at your school district. These programs have a variety of settings (inclusive in-class therapy, class within a class, pull-out, separate room) - it all depends on what is the least restrictive environment for your child to learn.

Please educate yourself on your rights as a parent of a child with special needs - and her rights - when moving into the school system. Do not feel pressured to move into any setting you do not see fitting for your child.

Lastly - congratulations again on your third little girl! She will bring you much joy in life, as your others have, just in a different way :)

Hugs,
J

Hi C. - I worked in the First Steps program for several years. If your daughter will be in Neonatal Intensive Care Unit - they call it NICU, she will automaticly qualify for First Steps Services from Birth to Three years. Services include Speech and Language Therapy - Physical Therapy, Occupational Therapy and Developmental Teacher. When she qualifies for First Steps, she will be assigned to a Regional Case Manager. Regional Services are for children in the state of Missouri who have mental retardation and developmental delays. ( MRDD) Your Pediatrician can refer you for those services. Once you are assigned a Case Manger - the process begins. First Steps is a service funded through the Department of Mental Health in the State of Missouri, If you have insurance that may pay for her Medical needs, they will ask you to use your Insurance. The Therapies are not usually covered by Insurance - so those are paid for by the State - no cost to you. These services will bring your daughter up to her Third Birthday. Before she turns 3, you will have a meeting with your First Steps Providers to get her into an Early Childhood Special Education Program ( again no cost to you - provided either by Special School District - or if you live in Pattonville, KIrkwood, Rockwood, or Ferguson Florissant your school district will provide the early childhood program for her. If you want to talk more about this process - please email me privately, and I will give you my phone number to talk with you more.

As for the Social Security benefits, some children qualify for SSI to help defray the costs of care for the child. Your Regional Case Manager will be able to explain all of that to you. I really don't know how they qualify.
Sincerely, G.

I think you are getting prepared as much as you can at this point. First Steps is a program that provides therapy in the home environment. They provide physical, occupational, speech, dietitic servics and some others. I am sure that they could not do anything until after the baby is born, but it would noy hurt for you to call and ask questions you may have. I wish you the best with your precious baby girl!

My sister's twins were born at 26 weeks gestation. They had developmental, physical, and neurological problems. One had Cerebral Palsy. My sister's twins were greeted by a slew of doctors, specialists, social workers, home health nurses, and organizations once they were born. They were born in a major university hospital. My sister had to put in the paperwork for SS and they both qualified as soon as they were born. Unlike when someone normally applies for SS, they were approved the first time due to their disabilities. It won't be hard. Good luck!

Check out the Britain Center at Shawnee Mission Medical Center. Here is the website https://www.shawneemission.org/content/view/338/652/
I've heard great things about this place.

C.,

I have twins, and one of them has had a lot of medical issues, but we are now seeing the light at the end of the tunnel. I'm not sure what your financial situation is, but I wanted to let you know that because of the disabilities your child will more than likely qualify for SSI (Supplemental Security Income). The hospital that you deliver at should have contact info, or you can contact your local Social Security office. The amount of SSI depends on the parent's income, it could be anywhere from enough money for a pack or two of diapers every month, to $600-$700. Every little bit helps. Your little one will need a social security number to qualify as well, but if you arrange a meeting with Social security shortly after her birth they should be able to help you out with the SSI and the number at the same time (this speeds up the process, I received my little one's ssn in 5 days and started receiving SSI payments at the beginning of the next month). I wish you the best of luck with everything, you will be in my prayers. If there is anything else I can do to help, feel free to message me!!

My middle child is now a beautiful six year old girl with cp, right hemi, seizure disorder and speech disorder. We have been through all of the therapies and First Steps was our one resource for all of it. They took care of me and told me to do all of what you listed. I would contact them right away and start the therapy. With medicaid, it's a little more complicated. But, if she will be perminantly disabled they have a seperate medicaid that she will always be covered on. Contact the family services and ASK QUESTIONS. That is very important. Never walk away confused or unsure. SSI, I was told can now be applied for online which we will be doing today. It goes off of your income also. I would do this as soon as possible. If they tell you to come back later then no harm done. My major advice is to know her conditions inside and out. Research and read her records. Doctors take you more seriously because your educated, you took the time and you obviously care about your child. To me, it seemed as if once they realized I knew what I was talking about they suddenly noticed me as if I wasn't there before. This isn't always the case, just a generlization of my expereince. Like I said before: ask, ask, ask. Make them give you all the info you need. And, of course, you are her advocate for the rest of her life. You are an advocate for all of your children you'll just be doing more advocating for her. You will need guts and a good support system, team work with your husband and other children. You can't do it all yourself. I will also help you around every corner. I wish I had someone who knew what I was going through. I want to start a group and live up north so if you need anything send me a message.

C., You are not alone. Visit www.rileyswarriors.org . They will be a wellspring of information and support for you. God bless! C.

I dont have a child with these needs, however all Gods children are blessings and I truly believe it takes a special person to have a child with such needs and you were choosen. I pray for you to be given the wisdom from God as you go through her life. Love is the most needed factor. With this you can get through anything. God Bless your family.

As a special ed elementary teacher and a mom who has gone through testing for oldest daughter, First Steps is a wonderful program. Given that you are already aware that she will have some special needs, I would go ahead and contact them. They can walk you through the whole process. They typically work on a sliding scale based on income and should be able to give you info on Medicaid and SSI. I know that with babies born prematurely and are in the NICU, First Steps is usually automatic. Best of luck to you!

First Steps should have access to all the resources you need. I don't know if they can give you information now, before she is born, but you could call and at least get more information about their agency. You will get a service coordinator after your baby is born, and she will help you access all the resources you need, and the services your daughter needs. Therapies may not start immediately, however, depending on how medically fragile she is. Initially, just try to get rest yourself so you can take care of your daughter who will need you! I commend you for getting information now and preparing yourself for the birth of your daughter. I also second the suggestion to find a support group or at least another mom who has been through what you are about to go through, so you have someone to support YOU through this. First Steps may have info on that, too, or you may be able to get information from Children's Hospital.

No experience with this, so no advice to offer, but I just wanted to say GOD BLESS YOU and your family for welcoming this little one into your lives! It is truly heroic.

Hi C.,

You should be able for apply for a social security number at the time of her birth. I think it's a checkmark on the birth certificate application that the hospital you give birth at will give you. Make sure you request a copy of the birth certificate ASAP ($15)... you may need it for Medicaid purposes and you don't want to be delayed waiting for that to come (the thing the hospital mails you is a suveniour and will not work for legal purposes).

As for Medicaid, I previously helped people apply for Medicaid benefits when they were hospitalized w/out health insurance. I assume that you have applied for Medicaid for pregnant woman, which gives you prenatal coverage as well as 2 months of post-partum coverage. If you are approved (based on family and income size and you are counted as a family of 5) then your unborn child will be added to your case and have coverage automatically until her first birthday. However, it is so important to remember to call your caseworker soon after she is born to add her to your case... they will need proof of her birth, and often, the hospital caseworker/social worker can fax something upon request (a hospital "facesheet" typically works - it's what every patient has w/ their demographic info on it). I would likely request a social/case worker soon after her birth to see if she can assist with getting the info to your caseworker.. this would not be an unusual request. In fact, some hospitals (not many) but I know for a fact, that Truman East/Lakewood has on-site FSD/medicaid workers in the hospital.

I'm going to assume you will be taking your child to Children's Mercy??? This is THE best hospital! My son (now 8 months old) became critically ill at 8 days of age due to RSV and spent almost a month in PICU on a vent. I cannot say enough wonderful things about the staff there. The doctors and nurses are the best and will do everything they can to help you through this. They have child life specialist who can help your older girls understand what is going on as well as sibling playgroups for them. If one doesn't seek you out, ask your child's nurse for social work services as they will be able to help coordinate services that you may need upon leaving. Also, before you are sent home, the hospital will make sure you have what you need. My little guy was sent home on oxygen and the before we left, they had already made arrangements for Apria to be at our home when we got there and we also had home health services.

As for First Steps, because of all that my little guy has been through, we actually just met w/ an intake worker this week to see if he qualifies. There are certain diagnosis which automatically qualify babies for services, but I don't feel that you need to call them ASAP.. I truely feel the hospital will send you home with what you need and point you in the right direction. Once you are home, settled and comfortable, then you can call First Steps. We had Parents as Teachers out last week (Friday) for Landon's first visit of the year which is when we discussed some of our developmental concerns. I was told that when I first called First Steps to document when I called (day/time) and who I spoke with, as they have a certain timeframe in which to respond and do the evaluations. I called Friday afternoon, spoke with an intake worker by phone later that afternoon and Landon had his initial assessment 2 days ago. After some additional evaluations, we will know w/in 45 days of Fridays phone call (the date of referral) whether he qualifies for services.

A support group is a fabulous idea.. I joined Cafemom.com and found an online support group for RSV kids.. I have met wonderful moms around the country who share similiar RSV experiences as us and have really helped in knowing what to expect, something the doctors were never able to tell us.

Best of luck and feel free to send me a message if you need more info...

Hi C., I don't have a child with special needs but I used to work as a para in the special Ed. room. I just want to say that you have a big heart and that you and your husband are amazing people. It breaks my heart when some people find out that there child is going to be special needs and they decide that they don't want them. I don't know how anyone could do that. God Bless you, your family and your new little girl. I pray that her delivery will go well. The best of Luck to you!

Oh my gosh. First Steps has been a savior for us, please keep pushing if needed. I would call SS for verification if your child would qualify. Please also think about the Special School District, which I have been told could be ALOT of help. Keep your head high and good luck.

I'm no help as far as local resources but a friend of mine in Australia has a daughter that was born with Pierre Robin Syndrome. She had a trach not long after she was born, an NG tube, has had multiple surgeries on her jaw and surgeries to repair a cleft lip and palate. She is now five, in school and thriving.

Good luck with your journey, its a long hard road but the rewards make it all worthwhile.

I don't have any advice - I just want to say how much I admire you for the choice you have made, knowing the difficulties ahead of you. God bless you and your family.

If I may, what is the diagnosis of your child? When we found out in April that our daughter was now "special needs", we finally were accepted on Medicade and they covered three months back. THat helped tremendously esp. since her hosptial stay was in that time period. We have my husband's work insurance and then medicade and there are just a couple things not covered but the copays are only 15 for those so not bad at all. that is all i can help with at this point...www.caringbridge.org/visit/kenziechrisman

hi, C.! well, i would see about signing up for home health as soon as possible; try for it as soon as they put her in the nicu since her needs won't be transitory. if they give you any grief about getting medicaid seriously consider quitting your job. look online in your area for any support groups you can find; if you can't find her exact diagnosis just go for symptomology at this point. if you have medicaid she SHOULD be covered but i would apply in the hospital the day she is born. they have social workers there that can assist you with a lot of this, and so can pastoral care. don't be afraid to utilize these needs. as for ssn you have to have a dr diagnosis, then go and apply; they will tell you what you need when you get there. brace yourself: it's a lot of stuff and paperwork. the nicu (or icn, at children's mercy) will be a good resource center, too, for stuff like this because they are used to these needs; they probably have their own social worker. a lot of occupational and physical therapy (and speech, too; she will need that when she gets to eat food instead of tube feedings) is covered by the state but not sure how to go about getting that. good luck, and keep me posted!

I just want to say good luck with everything. First steps was a great help to me but if I were to try to access it now I would get no help due to income. Our wonderful governor and president have made sure that it is not very difficult to access services.

First of all I feel for you, and I know a little of what you are going through, my 2 year old daughter was born with spina bifida. It was such a crazy time for us. Depending on her needs and dissabilities, the hospital itself will have alot of those answers. She was transferred to Children's Mercy when she was born, and they sent a woman from their spinal clinic to us immediately, to explain to us what to expect with her and familiarize us with their yearly clinics. She has yearly evaluations and tests with MANY doctors and through the clinic we get it done in one day (along one). My personal advice to you as a mom is to remember to take care of yourself during this time. During that first year, I gained alot of weight from stress eating and got depressed. It can be hard, get a support for yourself set with friends and family!
Good luck and God Bless!