I am ALWAYS on the hunt for resources for Kenden. It has been one of the hardest task because I may not have the time, don’t know where to start, who to ask…..the list goes on and on. However, I have been blessed to have a “go-to” list of resources. Many parents have reached out to me asking about Kenden’s resources. So I decided to blog about it!
Resource #1 -Teachers, Doctors, and Therapist
The most important resource I have for Kenden is his teachers, therapist, and doctors. They are a vital key to making things work and getting what he needs. They are there to write letters to his Manage Care Organization( Insurance), write the orders and prescriptions, and find resources that I don’t know about. It’s imperative you have a strong relationship and communicate with them so they can help you. Ask them ANYTHING and tell them ALL! Tell them what you are experiencing and going through so they can lead you to the help. Utilize them and pick their brain for ABSOLUTELY EVERYTHING! They have literally taken heavy loads off of me. I tell them the good, bad, and ugly. They know my struggles and victories. Even if you don’t know what you need, tell them straight up “ I NEED YOUR HELP!” If you don’t have a strong team of professionals, I highly suggest getting one. They are you and your child’s foundation to what you need.
Resource #2 – Home Health Services
I believe this is the best kept secret. A good friend of mine told me about Home Health Services for special needs kiddos. I absolutely had no clue my child qualified for this service. Kenden receives 40 hours a week of Unskilled Certified Nursing Services in our home. The nurse is able to go to any outing we have ( doctor’s appts, grocery store, etc..) and complete all of his activities of daily living ( bathing, cleaning, toileting, feeding etc…) This is a HUGE help and relieve for me. Kenden is unable to attend a daycare or after school programs due to his behaviors. Also, I am a single parent and it can be overwhelming doing everything on my own. Medicaid (public health insurance ) WILL cover this service. To obtain the service, your child’s doctor will need to write an order for services. You and the doctor can determine the number of hours needed based on the need of you and your child. The doctor will submit to your child’s insurance for approval. To locate an agency you can ask for a Care Coordinator through the child’s insurance. They will be able to assist you in finding agencies that can accommodate the hours the insurance approved. Home Health is NOT perfect! Sometimes it takes some time to find the right nurse for your child. Be patience and voice any concerns that you have with the agency and Care Coordinator. You do have the option to move agencies if you aren’t happy or not able to get the hours covered. In my opinion, home health is worth a try. It has been one of the best resources I have tapped into. Yes, I have gone through a handful of nurses however we have finally found the perfect fit through prayer and patiences.
Resource #3 – Incontinence Supplies
When Kenden was assigned a Care Coordinator with his MCO ( insurance), she informed me insurance could supply wipes and pull-ups. Medicaid will cover the cost of this service. To qualify, the child has to be at least 3 years of age. Your child’s doctor will need to write an order and send to the medical equipment company. Once it is approved, you will start receiving monthly supplies via mail.
Resource #4 – Special Needs Grants
Grants are used to pay for respite, medical equipment, special needs camps, school, and varies other needed things for special needs kiddos. I personally have utilized grants for respite and camp. Below I will list grants I currently have or utilized in the past.
1. Family Support Program– This is a program for children and adults with severe disabilities. Funds can be use to pay for respite, daycare, medical equipment, transportation, and varies other services to help the person with the disability and caregiver maintain in their home and community. This is a state funded program. To find out if your state has a program I would speak to your child’s therapist, doctor, and check out your local state’s website. If you live in TN the website is https://www.tn.gov/didd/for-consumers/family-support.html
2. Tennessee Early Intervention Service– TEIS was God sent. They set up services for speech and occupational therapy for Kenden. Also, they helped transition him into Special Education Pre-K. The purpose of the early intervention programs is to support families in the development of the child with disabilities. It’s an awesome resource for children up to 3 years of age. Your child’s physician or visiting your local state’s website will give more information about early intervention and the services offered to families.
3. Tennessee Respite Coalition– TRC has funding for families to pay for respite services. Families are responsible for finding their provider however TRC is able to give 600 dollars per calendar year. The funding CAN be use for summer camps. This is a TN ONLY resource. You can find more information on TRC at https://tnrespite.org/about/faqs/.
4. Autism Spectrum Disorder Foundation– ASDF has been amazing to my family. For two years in a role they paid the cost of Kenden’s summer camp. The goal of ASDF, is to provide funding that will benefit the needs of children with autism. They have several programs that families can take advantage of. I have personally utilized the Social Skills Summer Camp Scholarship. Thankfully each time I have requested funding they were able to assist. Each program has a timeframe for submission, please be mindful of that. It’s super simple to apply for funding. To learn more about ASDF visit their website, https://myasdf.org/about-asdf/. If possible, please donate to them. They really are a wonderful resource and asset to the Autism Community.
5. Varghese Summersett Autism Scholarship– Kenden was a recipient of this grants several years ago. He received 500.00 dollars that was used to pay the cost of summer camp. The purpose of this scholarship is to go towards the child’s education and recreational needs. It was not hard to apply. I had to send an email explaining how the funds would be utilized, get a letter of recommendation from a close friend, teacher, doctor, or family member, and submit a photo of Kenden. There is a deadline for submission. https://versustexas.com/autism-scholarship/ will give more information about their Autism Scholarship.
6. MyGoal Autism Grant- I believe it was 2 years ago Kenden received a grant in the amount of 1,000 dollars from MyGoal. The original purpose of the grant was to pay the cost of camp but it was already covered by ASDF. I was able to keep the money and I used it to open a checking and savings account for him. The purpose of this funding is to support families supporting and caring for an individual with Autism. Their application was a little more detailed compared to the other grants but it’s worth it. If you are able to donate to this organization, please do. They are making a huge difference in the lives of people with autism and their families. For more information go to https://mygoalinc.org/mygoal-autism-grant-program/.
7. Medicaid– Medicaid is public health insurance. There are criteria’s to meet in order to qualify. If your child has Medicaid talk with your child’s physician or call your child’s Managed Care Organization (MCO) to see what they will cover. Medicaid has paid for Kenden’s medical equipment ( car seat, bed, activity chair), nursing services ( CNA), and his incontinence supply ( pull-ups and wipes).
Recap
I do hope these resources are helpful. Again, it’s so vital to utilize your teachers, doctors, and therapist. They are your plug to what you need and want. Also, Google has been a huge help! A majority of these resources I found on Autism Speaks website. They have several others but the ones I referenced have been a successful for Kenden. If your child has Medicaid. Please reach out to their MCO ( Managed Care Organization) to see what services or equipment they will cover. You will be surprised what they can do. I have currently submitted for 24 hour care AND direct admission into the hospital for Kenden for my upcoming surgery. I am waiting for approval for both. If you have any resources please respond to the blog and share. look forward hearing your resources!
Exploring the Life of Kenden Carter 