The following webpage lists Grants for children with Autism. 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. There are resources that will help. Programs cannot overlap, if expenses are covered in one, you can’t claim them in another program as well.
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. You’ll need your child’s records showing that they are disabled and you can sign up for this prior to diagnosis. 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 Grants for children with Autism 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 Grants for children with Autism 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 Grants for children with Autism 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 independent living.
CDCS Grants for children with Autism or Consumer Directed Community? Support Grants for children with Autism 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.
Schools are legally-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 for children with Autism. 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 for children with Autism. 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. 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.
These Grants for children with Autism 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 so their child gets whatever they need!