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Get a Medicaid Waiver for Kids with Special Needs

Updated on October 21, 2020

A guest post by Natasha Cornin


How to access a Medicaid Wavier for Kids with special needsIt has been a little more than a year since the start of my journey to obtain a Medicaid waiver for my six-year-old son with autism, but I am relieved to say I finally walked through the “Front Door” and obtained a Medicaid Service Coordinator for my son – another step toward accessing additional therapy, family reimbursement and more.


 


 


Access to the services offered through a Medicaid Waiver is managed by the state department of the Office for People with Developmental Disabilities (OPWDD). Once your child is deemed eligible for the Waiver, you’ll enter the second phase to obtain services through OPWDD. As an ASD mom who felt overwhelmed and frustrated through the lengthy process to access Waiver services, it is my sincere hope that this post provides some valuable guidance on the process and what to expect in order to make the next parents’ journey easier and less stressful. Just be aware, there may be some variations in your city/state. This is my experience with my state’s procedures.




Natasha Cornin AngelSense


Step 1


Contact an information and referral service to schedule a neuropsychological, psychosocial and family history evaluation. I went with YAI/LINK since we’ve always received services through YAI and they have been professional and compassionate.


 


Step 2


Go through the evaluation process to determine whether your child meets the eligibility requirement to access additional services and support through the Waiver/OPWDD.


Step 3


If your child is found eligible, your next step will be to attend a session called “The Front Door” orientation.


Step 4


Once you attend the orientation, you will select an agency through which to obtain a Medicaid Service Coordinator (MSC). The MSC will contact you to conduct an intake interview in person or via phone.


Step 5


At this stage you can collaborate with your child’s coordinator to access therapy, social groups, respite care, camps and family reimbursement, among other support for items related to your child’s care. The services and amount of family reimbursement will vary by city and state. However, regardless of what your local area provides, it will be support toward the development and enrichment of your little one in excess of what’s noted in their IEP. The services are solely based on the child’s disability and determined required level of care, regardless of the family’s income.


This is a process that requires perseverance and patience but as autism parents those characteristics are our middle names. I hope this information is helpful and we would love to hear from you as you go through this process, or if you have insights as a parent who has successfully navigated the process to acquire a Medicaid Waiver for your child.


Visit the Medicaid waiver site to view information specifically related to your home state, eligibility requirements and a full listing of services and support one can access via the Medicaid Waiver. For more on The Office for People with Developmental Disabilities (OPWDD) and how they provide a wide range of services to children and adults with developmental disabilities, visit this site.


Natasha is the mom of Jaeden, a six-year-old son with Autism and speech apraxia. She became an AngelSense user following the increasing cases of kids with autism going missing, especially the story of Avonte Oquendo, whose disappearance in 2013 sparked a renewed conversation about elopement and safety for children with special needs. The use of the AngelSense system has empowered her to join the customer care team so she can  pay it forward to other parents of children with autism looking for an additional way to watch over and engage their little ones. She is also the founder of Full Spectrum Essentials – a resource site for mothers of children with autism. 


This is Natasha’s experience in New York State. Other states will vary on procedures and allowances. Please share your experience in other states in the comments!


 


12 Comments

  1. David July 5, 2016 at 2:47 pm - Reply

    Hi. We’ve been going through the process in Ny for some time now and finally we have a deeming letter. Have you found any websites or do you have information on filling out the DSS application? For example… even though parents income is not considered is it still put on the application? Whose name is it filed in and such? Any help is greatly appreciated. Thank you
    David..

  2. Kendra Nino August 12, 2016 at 12:07 am - Reply

    I really need this my son is already diagnosed with Autism and ADHD and he is a runner and unfortunately I am disabled myself and am way too slow for him how do I get Medicaid to pay for this??? I’m scared to death he’s gonna run off and I will lose him …Please help!

    • Nicole September 28, 2016 at 3:23 pm - Reply

      To get the Medicaid Waiver approval you need to first locate your state of residence via http://www.medicaidwaiver.org/index.html and contact the local office to get details on the application process.

  3. Frances August 18, 2016 at 12:18 am - Reply

    Hi David,
    My name is Frances, I would like to know how you got started as I’m looking through the site I am having a hard time navigating it. My 14 has a learning disability and ADHD so I really don’t know where or how to get started on the Waiver, is there a way you can help me if at all possible I live in Goshen NY so I’m just completely at a loss. Thank you in advance for any feedback!!!

    • Nicole September 28, 2016 at 3:17 pm - Reply

      Step 1: Contact an information and referral service to schedule a neuropsychological, psychosocial and family history evaluation. I went with YAI/LINK since we’ve always received services through YAI and they have been professional and compassionate. https://www.yai.org/link

  4. Michelle Henson September 30, 2016 at 10:35 pm - Reply

    much abuse with excessive hours of care for some parents

  5. Michelle Henson September 30, 2016 at 10:36 pm - Reply

    once parents get nurses they want 24 hours a day,7 days a week,very sad and some get it

  6. Anna December 3, 2016 at 8:34 pm - Reply

    I need help getting started. I live in Florida and my son already has a neurological diagnosis for autism. Where do I go from there? We are not eligible for regular Medicaid due to income and florida kid care only offered insurance through Sunshine healthy kids and they don’t cover ABA services.

  7. Joan January 5, 2017 at 6:55 am - Reply

    I am caring for my sister who can not live on her own. Years ago she was diagnosed – MR. She does not qualify for Medicaid so she can not get In Home Support services. She has 8,000 dollars in her checking which disqualifies her. If she has a waiver does that help qualify her. I care for her 24/7.

  8. Medicaid for Assistive Technology: 5 Things You Should Know if Your Child Has Special Needs - AngelSense February 28, 2017 at 3:55 pm - Reply

    […] difference. For an example of a successful application process, we recommend reading about a mother in NY who received a waiver for a GPS Tracker for her son with […]

  9. Alma Resurreccion March 30, 2021 at 7:34 pm - Reply

    I am a mother taking care of my son with angelman syndrome since he was a kid now he’s 26 yrs old now and I’m still taking care of my son. He can’t talk and walk and he is developmental delay .I’m a working mother and asking for a waiver for my son.

    • Sidra @ AngelSense April 6, 2021 at 2:47 pm - Reply

      Hi Alma, Thanks for your comment – I hope your request for a waiver for your son is processed quickly!

      To help during these challenging times we have dedicated a portion of our budget to offer our Guardian Kit at a significant discount to families in need who are unable to get government assistance. With the majority of our team being special needs parents, we are fully aware of the financial challenges our community is facing and are always examining ways to make the service more affordable without compromising safety & reliability. We truly hope that offering the discount on the device and greatly reduced set-up fee will give more families the opportunity to use our life-saving device. We have a list of funding options that we keep updated. Please check it often to see if there is anything relevant to you: http://www.angelsense.com/help/getting-funding
      Many of our users have received full funding for it via Medicaid waivers, insurance, or their Sheriff offices. There are also many community support organizations that we work with as well. Each one has its own requirements and criteria for funding. There are definitely sources out there! We are always gathering information to share so that AngelSense is affordable for everyone!

      Please also take a look at this page: http://www.angelsense.com/autism-gps-funding-options Your medicaid waiver caseworker should be able to tell you what they cover exactly. We work with many caseworkers directly and it differs from county to county across the US. The link here will take you to our information about how to get started with getting medicaid waivers to cover AngelSense, what to ask the caseworker and codes they might need to use for their systems.

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