Complex Child is a monthly online magazine written primarily by parents of children with special healthcare needs and disabilities. It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand.
Faces of Spina Bifida
Faces of Spina Bifida online magazine is a place to celebrate diversity among people living with Spina Bifida. It’s an online community where people chronicle their lives, are inspired, and make connections.
New Mobility was launched in 1989 to bring quality journalism to an underserved readership. Founder Sam Maddox recognized a community of wheelchair users who wanted more information on how to lead active, healthy lives and were willing to speak openly about everything from so-called "walking programs" to sexuality. He tapped seasoned writers with disabilities and college interns alike to produce a unique resource that shattered stereotypes and told real stories of living life on wheels.
SPORTS 'N SPOKES is a bimonthly publication produced by the Paralyzed Veterans of America.
S'NS reports on competitive sports and recreation for wheelchair users. Since 1975, S'NS has been a leader in wheelchair sports coverage and currently goes to more than 43 countries worldwide. Our readers come from all walks of life all having one thing in common: determination! SPORTS 'N SPOKES is committed to providing a voice for the wheelchair sporting and recreation community.
Music is one of the most powerful influences of our emotions and subconscious. With over 100 songs to choose from, your child will absolutely benefit over and over. Click on any CD below and choose your child's name to hear for yourself.
Our goal is to provide every Children’s Hospital and Pediatric Department in the country with a Kid Flicks “movie library.”
Icing Smiles
Icing Smiles is a nonprofit organization that provides custom celebration cakes and other treats to families impacted by the critical illness of a child. We understand that the simple things, like a birthday cake, are luxuries to a family battling illness. Our goal is to create a custom cake for the ill child, or their sibling, that provides a temporary escape from worry and creates a positive memory during a difficult time.
Inspiration Through Art (Formerly the Littlest Heroes Project) provides the following services; Photo sessions for children infant- 21 who are dealing or have delt with any type of serious illness, children who have been a part of any type of serious illness resulting in illness or disability, photo sessions for families who have lost children within the last 3 years due to a serious accident or illness, organizations or foundations holding events/ fundraisers for a child or for children suffering from serious illnesses, care package send outs, snail mail support letters and cards, bracelet/necklace gifts, mailing lists with specials and discounts for participating families. All of our services are free to the participants as a way of giving back to the smallest of heroes.
Ted Meyer loves bodies. He loves to paint them, photograph them, even print off them. He loves healthy bodies, but also bodies in states of trauma and healing. He creates puzzles of bodies that celebrate sexuality and survival. Through his artmaking, photography, design, curation and publishing projects, Ted portrays the beauty and humor of physicality while exploring narratives of the human condition
4 Paws for Ability Service Dogs Do you know of a disabled person who needs a service dog? 4 Paws for Abilities has few restrictions for acceptance and works with most families within the boundaries of our organization's ability to train and place the type of dog needed. We say "yes" when many more traditional assistance dog placement agencies say "no."
Canine Angels We all know how valuable service dogs are to people with disabilities. They provide constant companionship and assistance with everyday tasks such as retrieving dropped items, opening doors, and getting help. Many organizations providing service dogs focus on adults. Canine Angels Service Teams fills a unique niche in the service dog world by providing specially trained service dogs, at no cost, to children as young as 5.
Canine Companions for Independence The most advanced technology capable of transforming the lives of people with disabilities has a cold nose and a warm heart. Canine Companions for Independence® provides highly-trained assistance dogs for children and adults with disabilities, free of charge.
My daughter's first year of preschool has not exactly been all I had hoped it would be and much of that rests on my shoulders and how I approached our very first IEP meeting. Here are some of the mistakes I made:
- I Should Have Educated Myself: Those first couple of years with our daughter were busy and stressful. I'm a college-educated man of at least average intelligence so I figured there was no reason I couldn't sit down with a preschool teacher and hash out a common sense approach to what my daughter needed at school. Plus, who wants to read up on public school IEP mumbo jumbo when you already have your hands full with the day-today? What I should have done is started reading little by little once my daughter turned two so that I was better prepared for our first IEP meeting once she turned three.
- I Didn't Ask For Help: While slowly reading up on the ins-and-outs of the IEP process, I should have been interviewing friends and relatives who were teachers. I should have spoken with other parents who had already been through the process. I should have contacted a local advocacy program for a consultation. I should have considered enrolling in one of the many affordable (if not free) seminars on special education that are offered in my area.
- I Went In Alone: I didn't have much faith in the abilities of our Early Intervention Coordinator so when she offered to come to the IEP meeting with me, I declined. Instead, I should have contacted my Early Intervention office and asked to be switched to a coordinator who had the most expertise with IEPs and then taken him/her with me to the meeting. If not that route, I should have hired an advocate or at the very least taken a more knowledgeable friend with me (at least for that very first IEP meeting anyway).
- I Assumed That the Large Number of People at Our IEP Meeting Was an Indication of The School's Dedication to Serving My Daughter: The truth is, certain people from the district are required by law to be there (generally speaking they are): At least one general education teacher, at least one special education teacher, a school district representative, the person who assessed your child, often a typist taking notes and others as needed. The reason so many people need to be there is 1) To protect the school district and 2) To craft the best plan for your child. In. That. Order.
- I Assumed The IEP Meeting Was a Kum-by-ya Event: where people who had dedicated their lives to helping darling children such as mine would hash out in a common sense way what was best for her education. In reality the IEP meeting is a quasi-legal proceeding in which the parent advocates for how their child is going to be treated, educated and what services will be provided. The IEP is a written contract between you and the district. You want the IEP to protect your child if the district doesn't hold up their end of the bargain and the district wants the IEP to protect them in case you decide to file a complaint or worse yet, sue.
- I Assumed the School Would Make Necessary Modifications to the Playground as Needed: My daughter is in a wheelchair and even though the school did not have an accessible playground, I assumed they would make reasonable modifications. Imagine my surprise when my wife came home in tears after volunteering at our school because my daughter was spending recess time in her wheelchair watching the other kids play. I spoke with the principle and her response was, "I will have to look at her IEP". I should have addressed the issue of integrated play more aggressively in our IEP meeting.
- I Assumed the School Would Integrate My Daughter with the Other Students in Her Class: When an emotionally disturbed student began attending my daughter's class, we became concerned she would be trampled if she was playing on the floor. The school district's answer was not to get the new student what he needed but instead to confine our daughter to her wheelchair for the entire school day; even when the other students were sitting on the floor playing or in singing/circle time etc. I should have more aggressively addressed classroom integration at our IEP meeting.
- When Many of My Assumptions Proved to be False, I Felt Betrayed: The truth is, I had an understanding of the IEP process that was not rooted in reality. My lack of preparation contributed to me making all sorts of "common-sense" assumptions that proved to be false. When my assumptions proved to be false, I had many sleepless nights bemoaning how the school district betrayed us.
I should have educated myself, asked for help and taken an IEP ninja with me. Instead, I went in with a song in my heart and my heart on my sleeve. I could have sent a Golden Retriever in my place for all the good I was at our first IEP meeting.
The Good News Is: You can always call another IEP meeting when you feel the need to make adjustments or corrections.
So I Have Learned: Its okay to love and support your school and your teachers:
But when it comes to crafting an IEP, do yourself a favor and become an IEP ninja or take someone with you who is:
I have learned from my mistake. If you have your first IEP coming up, I hope you have too!
Similar to Shriners, the Scottish Rite is not a government program. Members pay dues and raise funds to provide various health services to children in need (commonly but not limited to speech therapy).
CLICK HERE to find your local Scottish Rite Center and the services they provide.
Shriners is NOT a government-funded program. Shriners is a private organization that raises it's own donations to provide health care to children with disabilities. Shriners has a network of hospitals throughout the United States and the world providing some of the most cutting edge health care available.
Children are accepted at Shriners if, in the opinion of the medical professionals there, the child could benefit from their services. All services are 100% free - regardless of the family's ability to pay.
In addition to the government, there are some excellent non-governmental resources out there as well.
The Elisha Foundation
The Elisha Foundation was founded to provide refreshment and encouragement to families caring for people with special needs. Through our programs we seek to provide access to resource professionals, educational specialists and other valuable resources.
Family Voices
Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through our national network, we provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.
Kids as Self-Advocates
Kids As Self Advocates (KASA) is a national, grassroots project created by youth with disabilities for youth. We are teens and young adults with disabilities speaking out. KASA knows youth can make choices and advocate for themselves if they have the information and support they need.
Walking with Anthony
Walking With Anthony’s mission is to forever change the recovery outcome of spinal cord injury, currently perceived as unchangeable. Walking With Anthony is committed to: Educate/Raise Awareness, Support SCI Research, Expand SCI Rehab Centers, Provide Financial Assistance to Individuals with SCI
If your child is receiving Early Intervention Services such as Physical Therapy, Occupational Therapy or Speech Therapy, those services will most likely become the responsibility of your local public school system once your child turns three (depending on your state). Some insurance companies will not cover services such as speech therapy once your child turns three because they assume your child will be receiving those services through the public school system.
For some background and history, this video is worth your time:
http://youtu.be/DUn6luZQaXE
It is important to remember that our nation's school system did not make these changes voluntarily. The changes came because Federal Law imposed them on the school system. While there are MANY talented, hard-working and committed educators in our special education programs, it is unwise to assume that every teacher and administrator in your school district supports the concept, goals and additional expenditures that come with a special education program. This is one of the reasons IEPs are a necessity.
Anecdotally, I have had wonderful, kind and compassionate educators (personal friends) tell me that they absolutely do not think children with disabilities should be integrated into the general school population (I disagree). I have had a number of special education teachers (not in my district) tell me that even when they know their school district offers a program that would help one of their students, they are forbidden by their district to inform the parents because the additional services cost, you guessed it; additional money. Imagine if you took your child to the doctor and the doctor knew what was wrong and knew what would cure the illness but refused to tell you. Sadly, that is the state of certain areas of special education these days. It's getting better but just as the Emancipation Proclamation did not cure racism overnight, our special education laws did not immediately and completely do away with discrimination against those with disabilities.
Special Education does not "just happen" the way typical education does. A good IEP will not only be the vehicle that will provide your child's education, it will protect it as well. As a parent, you are the primary key to whether your child's IEP is robust and effective or otherwise. Believe me, much to my shame, I know from experience. For a laugh, you can read my post entitled "How I Botched My Daughter's First IEP".
But who wants to read a bunch of special education legal mumbo-jumbo? Nobody. But it has to be done. That's why I recommend starting when your child turns two years old. This will give you a full year to read and educate yourself little by little at a comfortable and workable pace.
IEP Resources:
Familiarize yourself with the the five main laws concerning IEP's, Special Education and Disability. You don't have to read the actual laws but a scan of the "high points" on Wikipedia is worth your time:
In addition, your state may have passed laws strengthening the Federal Laws. For instance, those in California would want to take a look at the Lanterman Act. - Friends and Family: Chances are, you know a teacher. They may not be a Special Ed teacher but I bet they know someone who is. Make a connection, buy them coffee, ask them for the top ten things that make an IEP great. Contacting teachers in a different school district than your own is great as they may feel more free to advise you.
- Other Parents: Talk with other parents who have had children in Special Ed for at least a couple of years. Take advantage of their wisdom gained through experience .
- Special Education Rights and Responsibilities Handbook: This is a free publication from Disability Rights California. It combines both Federal Law and California law so every last sentence may not apply to your state however it is an excellent resource to get you familiar with the IEP process.
- Spend Some Money at Wrightslaw: Wrightslaw is considered by many to be the premiere source for Special Education guidance. You can find their books on Amazon as well. They also have an email newsletter you can sign up for - which I recommend.
- Check Out Disability Rights Advocates: DRA is a non-profit legal center whose mission is to ensure dignity, equality, and opportunity for people with all types of disabilities throughout the United States and worldwide.
- Google "Special Education Advocacy" in your area and see what comes up. Chances are, you will find an organization you can consult with or possibly even take a class on IEPs that is offered.
Special Education Advocacy Certificate Program: This training is designed not only to help parents and professionals better understand special education law and its application, but also to help future advocates develop the skills to effectively facilitate the IEP process. Ultimately, we seek to reduce the barriers between parents and schools in order to promote good communication and effective negotiation, in addition to working ethically and responsibly for the benefit of the child with special needs.
Team of Advocates for Special Kids (TASK)
Team of Advocates for Special Kids (TASK) is a nonprofit charitable organization whose mission is to enable individuals with disabilities to reach their maximum potential by providing them, their families and the professionals who serve them with training, support, information, resources and referrals, and by providing community awareness programs.
Compass Center at University of San Diego
The COMPASS Family Center is a San Diego non-profit organization that provides family-centered supports for those caring for a child or adult with special needs.
State Council on Developmental Disabilities
The Council advocates, promotes and implements policies and practices that achieve self-determination, independence, productivity and inclusion in all aspects of community life for Californians with developmental disabilities and their families.
I KNOW. It's A LOT. But it is worth it. If your child has a physical or cognitive delay/disability, the sooner you get them the best possible educational help, the better. As I said earlier, there are ANGELS in Special Education who want to work hard to see your little one thrive . . . but they aren't all angels, and often the angels aren't the ones controlling the budgets. In many respects YOU are your child's guardian angel - become their educational angel too. Even angels have to sharpen their swords from time to time.
WIC, SSI, Medicaid, SCHIP and Early Childhood Intervention are funded whole or in part by the Federal Government and as such, each State has some version of them even if they call them something different (for instance, Medicaid is called Medi-Cal in California).
In addition, your State or County may have additional resources available to you (for instance, CCS in California).
The best way to find out what additional programs might be available to you is to ask the service providers you are already working with such as:
- Pediatrician - Physical Therapist - Early Childhood Intervention coordinator
CCS stands for California Children's Services. CCS is a State and County program designed to meet the additional health care needs that children with disabilities have. CCS works in conjunction with Medi-Cal (aka Medicaid) and Healthy Families (aka SCHIP).
Depending on your County, some CCS good and services, such as Physical Therapy and durable medical equipment such as wheelchairs, may be available to your child based solely on their disability. In order to get the full range of services available to your child through CCS, you will need to fill out a CCS application.
How to Apply
1. You will first need to apply for SSI Disability benefits (See Step 3)
2. If you are approved for SSI Disability benefits, you will automatically receive no-cost Medi-Cal. If you are denied SSI Disability benefits, you will need to apply to Medi-cal directly (See Step 4)
3. If you are not approved for no-cost Medi-cal, you will need to apply for Healthy Families (See Step 5)
4. Fill out the online CCS application, print it and mail it to your local CCS office
SCHIP stands for "State Children's Health Insurance Program". The program is designed to provide health care to children from families of modest income who may or may not qualify for Medicaid. The Federal Government provides matching funds to States for their SCHIP programs.
Once again, each State administers their SCHIP program differently and under different names (in California, SCHIP is called "Healthy Families").
Why you should apply for SCHIP:
1. Qualifying for SCHIP may make you automatically qualified for other programs in your state
2. Even if you do not qualify for SCHIP, some programs in your state may require that you be denied SCHIP before they will process your application for their program.
How to apply (outside California):
You will need to do an internet search for the SCHIP program in your state or contact your State's health department.
How to Apply in California:
1. If you have applied for HIPP (step 6), MediCal should have already made a determination on whether you are eligible for Healthy Families since MediCal will only approve you for HIPP if you do not qualify for Healthy Families.
2. In California, if you were not approved for HIPP or are not eligible for NO COST Medi-Cal, your application for Healthy Families should have been automatically forwarded to Healthy Families by your local Medi-cal office. THIS DOES NOT ALWAYS HAPPEN. So you will want to apply directly to Healthy Families to make sure.
3. Apply Online. If you do not wish to apply online, you may call 1-800-880-5305 to have an application sent to you.
4. If you apply online, at the very end of the application process, you will be given a fax cover sheet with a bar code on it to print. The fax cover sheet will indicate what supporting documents you will need to send to Healthy Families (such as pay stubs etc.).
*Don't worry if you do not have access to a fax machine, you can also use the printed fax cover sheet to mail your supporting documentation.
HIPP stands for "Health Insurance Premium Payment Program". HIPP is not an entitlement program. It is a program that is set up to possibly save both you and Medicaid money by shifting the primary burned of health care costs to your typical insurance carrier.
Although each state administers it a little differently, here is how it basically works:
Once you apply for HIPP, Medicaid (MediCal in California) will determine which of the two is likely to be greater: 1) Medicaid payments to cover your health care or 2) Your typical health insurance plan premium.
If Medicaid determines that your typical health insurance monthly premium (for example you health care plan through your employer) is less than Medicaid paying for your health care, HIPP will pay your family's health insurance premiums for you (typically they will send you a reimbursement check).
This means your typical health insurance premiums are paid for, saving your family money, and your health insurance plan gets billed FIRST before Medicaid which saves Medicaid money.
Each state has it's own requirements for the HIPP program so it is probably best to go to your state's website, and do a search for "HIPP".
Medicaid is a Federally-funded, income-based program that provides medical care to needy families. If you qualify for Medicaid, it will essentially act as a secondary health insurance provider to cover things your typical insurance does not. Medicaid is administered by your state and each state administers the program a little differently. For example, California's Medicaid program is called Medi-Cal.
1. Why you must apply to SSI first: You are going to want to apply to Medicaid based on your child's disability. Medicaid will require that you first apply for SSI Disability benefits before they will complete your application for Medicaid Disability benefits (See Step 5)
2. I applied for SSI Disability benefits and was approved: If you qualify for at least $1 in SSI benefits, your are automatically approved for Medicaid benefits. You will want to contact your local Medicaid office to make sure they understand that your child is disabled.
3. I applied for SSI and was denied: While qualifying for SSI makes you automatically qualified for Medicaid, being denied SSI does not necessarily mean you will be denied Medicaid benefits. The income requirements for Medicaid are less stringent than those for SSI.
Some Additional Things You Will Want to Know:
Beyond SSI and Medicaid, each state has it's own additional programs to assist the disabled. Most of these programs will require that you have applied for Medicaid benefits before they will process your application for their services.
Many states have Medicaid disability waivers which means that you will be automatically approved for Medicaid based on disability rather than income. This means that when you apply for Medicaid, you will want to specify that you are applying on behalf of your disabled child. For example, in California, you will want to contact Medi-cal and request "A full Medi-cal evaluation, not an evaluation for special programs alone."Also in California, you will want to request that your case worker complete a "DAPD Packet in accordance with Medi-cal Program Guide Section 5-4".
How to Apply:
It will be best to do an internet search for the Medicaid department in your state otherwise, you can try beginning at the Federal Medicaid site.
The first thing you will want to do is contact your Regional Center (Early Intervention) case worker. You need to request a Department of Developmental Services Institutional Deeming Medicaid Waiver Referral.
Once you have that referral, you will want to contact your nearest Medi-Cal office and request an application. Once again, be sure to inform them that your child is disabled and you want the following:
- A FULL Medi-cal evaluation - not and evaluation for special programs alone.
- Your case-worker to complete a DAPD Packet in accordance with Medi-Cal Program Guide Section 5-4
- Attach the Institutional Deeming Medicaid Waiver Referral
All Medicaid / MediCal dollars are not the same. How you are approved determines where the funds come from for your child's care. California will first try to approve you based upon your income. If they cannot approve you based on your income, they will approve you based upon the Institutional Deeming Waiver.
Four Possible Outcomes:
1. You will be approved for full-scope, no-cost Medi-Cal coverage
2. You will be approved for restricted Medi-Cal coverage
3. You will be approved for Share of Cost (SOC) Medi-Cal coverage
If you are approved for SOC coverage, Medi-Cal will let you know what your monthly SOC is. This is the amount of money that you must pay out-of-pocket in any given month before Medi-Cal assistance will be made available to you.
SSI stands for Supplemental Security Income. It is a Federally-funded, income-based program for the aged, blind or disabled. If you qualify for SSI, they will send you $$ each month to help with your expenses. SSI does not provide medical assistance. SSI is the same in every state.
While SSI is a program for the aged, disabled and blind, it is strictly income-based. In other words, you may be aged, you may be disabled or you may be blind but if your income is too high, you will not be approved. If you are approved for $1 or more in assistance from SSI, you will automatically be approved for medical benefits through Medicaid (Medi-Cal in California).
Why you need to apply for SSI Childhood Disability benefits:
1) Should you be approved for assistance, SSI will not only send financial assistance directly to you, but it will send additional financial assistance to Medicaid on your behalf based on your child's disability.
2) One of the requirements for Medicaid is that you first apply for SSI Childhood Disability Benefits.
1) Go to the SSI Childhood Disability Benefits link above and print the following:
- Factsheet
- Checklist (if you have already completed your Documents Folder, everything you need should be in there)
- Worksheet
2) Complete the printed worksheet from step one
3) Complete the Child Disability Report online or print a copy and complete by hand
4) Call SSI to do a preliminary phone interview and schedule an eligibility interview: 800-772-1213. (SSI eligibility interviews are usually conducted by phone however if you are applying for SSI Childhood Disability Benefits, you may have to go to your nearest SSI office for an in-person interview)
There are a number of reasons you want to apply for Early Childhood Intervention Services:
1) The sooner you identify any delays in developmental milestones, the easier they are to correct
2) In some states (such as California) your ECIS case worker will be the one to help get you approved for Medicaid (MediCal in California)
Early Childhood Intervention Services is a product of the Federal Individuals with Disabilities Education Improvement Act (IDEA).
From Wikipedia:
The program mandates a statewide, comprehensive, multidisciplinary service system to address the needs of infants and toddlers who are experiencing developmental delays or a diagnosed physical or mental condition with a high probability of an associated developmental disability in one or more of the following areas: cognitive development, physical development, language and speech development, psychosocial development, and self-help skills.
Once again, each State administers their Early Childhood Intervention Services differently. Some states may have it as part of their Early Head Start program, some may have it as different agency under a different name.
The goal of Early Childhood Intervention Services is to assist your child in meeting typical developmental milestones. For a more specific list of services, see Wikipedia's Early Childhood Intervention Services link.
In California, the Early Childhood Intervention Services program is called simply Early Start and is administered through the Department of Developmental Services. Services are provided through various "Regional Centers" and so the program is often referred to as "Regional Center", "Family Regional Center" or "FRC".
Before you dismiss the idea; a handicapped placard is about much more than parking in blue spaces.
Chances are, you are going to be visiting the hospital quite a bit this first year. Even if you NEVER park in a blue space, most hospitals will waive the parking fee if you show them your placard. I personally paid out over $100 in parking fees our first six months before a shocked nurse asked me why we didn't have a handicapped placard.
Again, even if you NEVER park in a blue space, most states will allow you to use public parking for free (ie; parking on the street and not having to feed the meter). In addition, most states will let you park in green zones (usually a 10-20 min limit) as long as you like.
We almost never parked in a blue space until our daughter received her first wheelchair and even now that we have a wheelchair we don't always take advantage of the blue spaces. But you becha' we used the placard to from the day we got it to save money whenever we could!
Typically, it is your pediatrician who will fill out the necessary form for you. You take it to your local vehicle registration office and voila!
For a run down on the Disabled Parking Laws by country and state, Click Here.
In addition, check with your state regarding reduced Disabled Entry Fees to your state's parks. For instance, Californiaoffers a Disabled Discount Pass. For $3.50 you can get a lifetime pass that will cut your State Park entrance fees in half!
