Your child has autism. Whether this is an official diagnosis or a realization that you come to after researching your child’s symptoms, it is like a blow to your stomach. Almost immediately you will hear ‘Early Intervention is key’ and this will run through your mind repeatedly. Time is running short. Autistic children need intensive therapy and learn better when they are younger. A year of speech therapy for an autistic child under age 8 or so (there is no magic age as all children are different) equates to three years of the same speech therapy for an autistic child over age 8 or so….the skills gained will be the same. So you rush around, trying to get the best and the most services and learning products on the market today. What you find is that until diagnosis, therapies are not covered by private insurance. Or there are no behavioral specialist in your state and your insurance will not cover it anyway! Your phone is glued to your ear speaking to the specialists, finding more resources for your child, fussing with your insurance company who has to know that ‘Early Intervention is KEY!’, and trying to find assistance paying for everything that your child needs.
Over the past two days, I have been thinking that there should be ONE place to go for parents of autistic children who need financial assistance. A webpage that lists all known grants and assistance for autistic children. The reason is because not one person in my county offices knew of many of the programs that I am listing. Some will not be offered in your county or state but some may. For the ones of you reading this who do not have autistic children and may be wondering why this is necessary, expenses add up quickly. At $100 an hour for therapies and private insurance refusing to pay prior to a diagnosis which may take years, the child is the one losing out on gaining needed skills if the families are unable to pay this out of pocket or through a grant. Before autism is diagnosed, other disorders have to be ruled out. This means the child will go through many months of tests including a MRI, genetic testing, and others. Also many families will move across the country to get the best services, schools, and specialists to help their autistic child. Of course anyone in the know knows that Wisconsin and North Carolina are the best states in the US to help children with autism. There are tons and tons of resources there that will help. If your caseworker, social worker, or financial worker does not know about these programs below, ask for a supervisor who will know more or know who to contact for the programs. None of these programs can overlap, if expenses are covered in one, you can’t claim them in another program as well.
It enfuriates me that word of mouth is the only way most parents will ever hear of these services available from the County or State for their child’s needs. These services are there for families of autistic children so why aren’t more people told about them?
Katie Beckett Waiver or Deeming Waiver is for families who make too much to sign up for Medicaid for their child. Your income is not considered in getting Medicaid for children with high medical expenses. Even though it is said that there is a long waiting list, we were able to sign up immediately once our income had knocked my child out of getting SSI. All you need is your child’s records showing that they are disabled. Yes you can sign up for this prior to diagnosis as we did. You sign up for this at your local county office…Department of Family and Children Services in some states and the Food Stamp office in other states. Wherever you would go to sign up for Medicaid is where you would go.
TEFRA Option under Medical Assistance is similar to the Katie Beckett Waiver but parents may have a fee to pay each month.
Children with Special Health Needs (MCSHN) covers expenses of diagnostic testing prior to diagnosis but also covers expenses for glasses, hearing aides, and dental care. It is based on family’s income.
SSI or Supplemental Security Income is based on income. You sign up for this at your local Social Security office. You will need your child’s physician records, therapy records, and any other tests that show your child is developmentally disabled. Autism diagnosis is not required! Severe developmental delays also will enable the child to get SSI. But parent’s income will knock children out of getting this. Again it is said that SSI is difficult to get and time consuming but once our income had dropped to under their limits, my child was approved and able to draw SSI within three months.
PCA or Personal Care Assistant is available in some states. This is through a public health nurse, ask about it at your county office or social worker/financial worker. The PCA can come out and help with your child or give respite for parents, or help do home therapy with your child. Although this is a blessing to sleep deprived parents of autistic children, it can be difficult to find the right PCA for your child. Many PCAs have exclusively worked with the elderly, not disabled children. The public health nurse will come out to your home to evaluate your child’s needs and give you a set amount of time for PCA services each day.
Consumer Payout Option for PCA services is a little known change from regular PCA services where an agency is paid and then the agency pays the PCA directly. You will need to talk to the public health nurse about this option. I do not know much about this yet and will update as I get more information. From what I was told this week, the family is given the monies and can pay the PCA directly or possibly pay parents and spouses for PCA services. Here is a link to some information about this: http://www.cga.ct.gov/2001/rpt/olr/htm/2001-r-0796.htm
Relative Hardship Waiver could pay parents to be the child’s PCA (any age). I ran across information too that parents of children over 18 could also be paid for boarding expenses. I do not know where to sign up for this but I would start with asking your financial and social workers.
Consumer Support Grant will pay parents of the child for providing PCA services. The maximum is 40 hours per week. This grant also covers equipment and other adaptive services your child needs. Transportation, nutrition services, and respite costs are covered too.
Family Support Grant has a maximum of $250 per month. The types of expenses that this grant will cover are computers, special clothing, special diets, equipment needed, transportation expenses, and medicine. This grant is a catch-22 for autistic children who may be able to ace an IQ test but can’t do other functional daily living skills. My child does not qualify at the moment for this.
Home and Community-Based Services Program and Community Living Assistance and Support Services is not based on parents’ income. These waiting lists are very long and will take years for your child’s name to come up but this is the type of program that will help your child with expenses related to living in a group home as an adult and other expenses for independant living. (I have not found much more information about this yet.)
CDCS Grant or Consumer Directed Community? Support Grant is one that I just heard about. It seems to be similar to Consumer Support Grant. This pays parents of child up to 40 hours weekly as well as PCAs for the child and provides needed therapy items as well.
Expenses covered by your County Social Services include gas reimbursement/food/hotel for going to therapy, specialists, and other out of town appointments for your child. All you will need is a referral from a local doctor saying your child needs to go out of town to get services. This can be a headache running here and there each month to provide the referral and then keeping all receipts together to turn them in. This is a lifesaver though for being able to afford to take your child to where they need to go. Many people do not have therapists, specialists, and other professionals in town for their child. At the moment we are driving 3 hours round trip each time for therapy and 10 hours round trip for her specialist visits.
Early Childhood Intervention or ECI is for children up to age 3 years old when they then can access the school’s services. They will provide therapies for free at the child’s home. If any developmental delay is suspected, your first call should be to ECI for assessments and therapies.
School therapy which I have little faith in after sitting in on sessions. Schools are required to give your child free therapy but will do the bare minimum each week. The group sessions are the worst where each child has different levels of need and various goals which cannot be met in a group setting! None of the children were getting what they needed out of it. Other therapists at school will try and do therapy in the classroom where the child won’t be able to focus. Request 1:1 therapy time at school to benefit your child the most. Schools are also required to offer year round services so your child does not lose skills learned during the school year, ask for summer therapy sessions in your child’s IEP or IFSP. If the schools ask for your child’s Medicaid card, refuse. It is your child’s right to receive free therapy at school.
School Parapro is hard to get for autistic children at times. A school parapro is a 1:1 aide for your child at school. A parapro can keep your child on track and focused in a classroom of 30 kids to 1 teacher.
Private therapy will not be covered by private insurance companies until after your child has a diagnosis. If your child has Medicaid, then it will be covered.
ASCONN Mini-Grant in Connecticut provides grants up to $1000 for safety products to keep autistic children safe in Connecticut.
Edwin Phillips Foundation Family Grants provide up to $1000 to families with autistic children in MA for any needs the child has and respite.
Assistance with Summer Camp and other activities will be covered under some grants. So far we have run across various places (respite care centers usually) who will pay for a child’s summer camp or provide monies for children’s activities such as karate, dance, and more. If your child wants to be in a certain activity, check around and request financial assistance or for the fees to be waived. At times, these activities will be free or low cost for lower income families. It does not hurt to ask for reduced or free fees for summer camp as well. The Girl Scouts specifically have a form that you can fill out to waive all fees for uniforms and summer camp.
This is not an all inclusive list of resources and grants but is all that I know of at this time. One suggestion that I have is to continue calling agencies to find out about local resources. Contact your local Autism Society who may know of more assistance. Remember if you speak to one person who does not know of anything, ask to speak to a supervisor or a lead person who may know of more resources. If you are in need of a specific item such as an Assistive Technology and Augmentive Communication device or PECs, make sure and mention this to everyone. As you never know when the right person will direct you to the right agency to provide it. Also ask your child’s therapists, specialists, and social worker as they may know of assistance as well. Schools are supposed to provide items for children with disabilities but it can be a struggle to prove your child’s needs to them.
Every day someone else calls me a “saint” or an “angel” for doing what every other parent does every day…caring for my child. I am not a saint and I would hope that other parents would do the same in our situation. Yes I wear many hats…I am my child’s teacher. I am my child’s therapist. I am my daughter’s advocate. I am an expert on my child’s abilities and needs. I am my child’s parent. I am my child’s chauffeur to activities for social skills and therapy for daily living skills. Some days I am my child’s punching bag. Other days I am my child’s hiding place as she hides her head under my shirt. I alone am my child’s voice to get her needs heard. I am my child’s biggest fan.
My daughter coming into my life has changed the direction of my life, sure. But now my life has direction and more meaning than it ever did before. I do not take for granted anything and see the small gains that she makes every day. I would not change it for the world. We were meant to be together. I have a very soft voice but can be persistant in getting my child’s needs met. EARLY INTERVENTION IS KEY!
These grants and resources can take a little stress off of families, I just wish they were easier to find and access! I know there are specialized summer camps for social skills but they are so expensive that families like us will not be able to afford them. The cheapest that I could find was $500 for a social skills camp. Look around your area to see if there are local resources for autistic children. Support groups may be a great resource to find more grants in your area. I hope this list will help another family early on so their child gets whatever they need to make progress in life skills!