Latest / Life Without a Filter: Practical Strategies for Life After 22 / Episode 8:“Turning 18: What Families Need to Know (201 Series)”

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Episode 8:“Turning 18: What Families Need to Know (201 Series)” · Life Without a Filter: Practical Strategies for Life After 22

• 0:13
  SPEAKER_00: Hi everyone! Parenting can be hard no matter what age or stage you are in.
• 0:19
  SPEAKER_00: But what happens when your child becomes an adult and they will need a lifetime of support?
• 0:24
  SPEAKER_00: I'm your host Cheryl and welcome to the podcast Life Without a Filter.
• 0:29
  SPEAKER_00: My goal is to share our not so unique, maybe specific journey as a family navigating the various special education transition services and creating our Sun's self-directed adult program.
• 0:43
  SPEAKER_00: While we don't have all the answers, our hope is that you can learn from our experiences to make your own path a bit smoother.
• 0:51
  SPEAKER_00: We'll also have some special guests providing resources and sharing their personal stories of navigating within the Adult Disability Services world.
• 1:00
  SPEAKER_00: Let's embark on this journey together.
• 1:44
  SPEAKER_00: Today we're kicking off what I'm calling the 201 series.
• 1:48
  SPEAKER_00: If you've read my blog, I did a post titled Transition 101 Transition Checklists.
• 1:54
  SPEAKER_00: In that post, I talked about the lists that helped guide us through those big transition years.
• 1:59
  SPEAKER_00: In this series, we're taking a deeper dive into some of the items on one of my favorite resources, the Turning 18 checklist, created by Catherine Boyle at Autism Housing Pathways.
• 2:11
  SPEAKER_00: This checklist was the very first tool I used when my son Elle was approaching adulthood.
• 2:16
  SPEAKER_00: It's simple, it's clear, and it covers the big milestones that start to come into play once your child turns 18.
• 2:24
  SPEAKER_00: Today I'll walk through several of those items, share what we experienced as a family, and offer a few tips that I wish someone had told me earlier.
• 2:34
  SPEAKER_00: So let's jump in.
• 2:38
  SPEAKER_00: If you are listening to the podcast and are more of a visual learner, I have inserted a link to this resource in the show notes that you can pull up and follow along.
• 2:48
  SPEAKER_00: If you'd rather watch, you can come check out my YouTube channel and follow along that way.
• 2:56
  SPEAKER_00: First, let's take a look at where to find the Turning 18 checklist.
• 3:00
  SPEAKER_00: If you go to the Autism Housing Pathways.org website, on the quick links, you will find the Turning 18 checklist link.
• 3:14
  SPEAKER_00: When you come to that page, you will then come to the next link, which will link you to the checklist, which was recently updated in November of 2025.
• 3:25
  SPEAKER_00: So if you're watching on YouTube, you'll see we are on the Turning 18 checklist.
• 3:30
  SPEAKER_00: And as I said in the intro, it's pretty simple, clear, and concise.
• 3:34
  SPEAKER_00: I love check boxes, and the first thing that you'll see is that there are check boxes here next to all of the items.
• 3:42
  SPEAKER_00: Let's start with the first item on the list, the 688 referral form.
• 3:47
  SPEAKER_00: If you live in Massachusetts, you've probably heard the term 688 referral thrown around during your IEP meetings.
• 3:54
  SPEAKER_00: In simple terms, it's the school district's way of notifying adult service agencies that your child will be applying for their adult services.
• 4:03
  SPEAKER_00: This referral should be made at least two years before the student ages out of public school.
• 4:10
  SPEAKER_00: If your child is currently on an IEP, may require continuing services because of the severity of their disability, or are unable to work 20 or more hours per week in competitive employment, your school district should be submitting the 688 referral form.
• 4:30
  SPEAKER_00: In Massachusetts, there are three agencies that the referral can be submitted to, and those are DDS, the Department of Developmental Services, MRC, the Massachusetts Rehabilitation Commission, or DMH, the Department of Mental Health.
• 4:46
  SPEAKER_00: If you live outside of Massachusetts, please check with your transition coordinator to see what departments the referral form would be made out to.
• 4:55
  SPEAKER_00: Even though Elle was already found eligible for DDS as a minor, he still needed to reapply as an adult.
• 5:02
  SPEAKER_00: This is something that I often hear parents not realizing that once their child turns 18, their previous DDS eligibility ends and they must reapply for adult services.
• 5:14
  SPEAKER_00: Another important fact to remember is that the 688 referral is not an acceptance into service.
• 5:20
  SPEAKER_00: It simply starts the application process.
• 5:24
  SPEAKER_00: Once the referral is submitted, the agency will reach out to you with the next steps in the application process.
• 5:31
  SPEAKER_00: And I can't stress this enough.
• 5:33
  SPEAKER_00: Watch your mail and your email.
• 5:35
  SPEAKER_00: If you don't receive anything in a reasonable amount of time from that agency, follow up.
• 5:42
  SPEAKER_00: For us, Elle qualified for adult services through DDS.
• 5:47
  SPEAKER_00: Because the referral was submitted two years ahead of time, we had plenty of time to complete the application process.
• 5:54
  SPEAKER_00: That early planning really does make a difference because the entire application process can take time.
• 6:01
  SPEAKER_00: When we went through this, it took about 10 months from the referral being sent to receiving the acceptance letter from DDS.
• 6:09
  SPEAKER_00: I have heard from families that their application process took longer.
• 6:14
  SPEAKER_00: The other reason you want to make sure you do this at least two years before graduation is if for some reason your child is denied services at the end of the entire application process, it gives you some buffer time to go through the appeal process.
• 6:29
  SPEAKER_00: The other reason you want to complete this at least two years out is because you want that agency to know that your child will be entering their program so that they can prepare for upcoming budget requests.
• 6:41
  SPEAKER_00: Because DDS had L in the budget based on his anticipated aging outdate, that gave us peace of mind knowing that he was already a known incoming client.
• 6:53
  SPEAKER_00: If you live in Massachusetts, in 2024, the IEP was revamped.
• 7:00
  SPEAKER_00: One of the sections that I really like in the updated IEP is the post-secondary transition planning now lives in the middle of the IEP as opposed to being an addendum at the end of the IEP.
• 7:15
  SPEAKER_00: If you scroll down here to the transition to adult service agency or agencies, 688 referral section, this is so nice because it makes it very clear to parents and to the team members what has been done or what needs to be done.
• 7:37
  SPEAKER_00: So the first question it asks is Is the student within two years of exiting special education services?
• 7:43
  SPEAKER_00: If you say yes, it then says, has the team discussed whether the student meets the criteria for a 688 referral?
• 7:52
  SPEAKER_00: If they do, then it's asking, has a referral been submitted for the student?
• 7:57
  SPEAKER_00: If yes, it's asking what date it was submitted.
• 8:00
  SPEAKER_00: If no, it's asking what date it will be submitted.
• 8:06
  SPEAKER_00: Or the team has determined that the student does not meet the criteria.
• 8:11
  SPEAKER_00: Once they've checked off yes, the referral is submitted, there is also a space for the team to insert which agency it has been submitted to.
• 8:22
  SPEAKER_00: The previous IEP, there was some language about this, but it is so clear-cut here that this avoids the tough conversation that some parents were having when their students were less than a year out of graduating or aging out of the public school system and the 688 referral fell through the cracks.
• 8:46
  SPEAKER_00: Now, because it is directly laid out in the current IEP, this cannot be missed.
• 8:53
  SPEAKER_00: The next item on the list I want to point out is for the Selective Service registration.
• 8:59
  SPEAKER_00: This one honestly made me pause at first.
• 9:02
  SPEAKER_00: If your child is male, they must register when they turn 18.
• 9:07
  SPEAKER_00: You can do this by visiting the Selective Service website.
• 9:10
  SPEAKER_00: I have included the link in the show notes.
• 9:13
  SPEAKER_00: Selective Service does address disabilities directly on their website.
• 9:18
  SPEAKER_00: They state that all men must register, even if they would ultimately be exempt from serving.
• 9:23
  SPEAKER_00: And yes, a parent or legal guardian can complete the registration on their behalf.
• 9:29
  SPEAKER_00: And here's what surprised me.
• 9:31
  SPEAKER_00: If you skip this step, it can cause delays or complications when applying for certain federal benefits like SSI.
• 9:40
  SPEAKER_00: So while it feels like one more random thing on the list, it's important not to miss this.
• 9:47
  SPEAKER_00: The next section has to do with applying for a Section 8 housing voucher.
• 9:52
  SPEAKER_00: Housing is one of the biggest long-term pieces of transition planning, and Catherine Boyle, who created this checklist, is truly an expert in this area.
• 10:02
  SPEAKER_00: I always encourage parents to visit her website, watch any of the webinars that she has available, and if you get a chance to hear her speak live, do so.
• 10:12
  SPEAKER_00: I've also put a link to the website in the show notes below.
• 10:17
  SPEAKER_00: On her website, if you go to the Quick Links, she has an 18 question mark, section 8 exclamation point site.
• 10:25
  SPEAKER_00: And if you click on that, it's going to give you information, including a section 8 video, that you can watch.
• 10:35
  SPEAKER_00: And also at the top, it has information on applying for section 8.
• 10:41
  SPEAKER_00: So the links to the centralized waiting list and to any other organizations that may have vouchers.
• 10:51
  SPEAKER_00: And she also has a section about staying on the list because what I learned is that just because you apply for Section 8 housing doesn't mean you always stay on the list.
• 11:02
  SPEAKER_00: You need to check at least once a year to make sure your name or your child's name is still on the list.
• 11:10
  SPEAKER_00: In many Massachusetts communities, the wait list for a Section 8 voucher is 8 to 10 years.
• 11:17
  SPEAKER_00: That means if you anticipate that independent or supported housing might be an option in your child's future, it is worth looking into this early.
• 11:26
  SPEAKER_00: Catherine's website also has an entire section called The Current Housing Situation, and it gives an incredibly detailed overview of what housing looks like right now for adults with disabilities.
• 11:39
  SPEAKER_00: She also teaches workshops and seminars, and I learn something new literally every time I hear her speak.
• 11:46
  SPEAKER_00: Even if you're unsure today whether your child will pursue this path, educating yourself early gives you time to plan.
• 11:54
  SPEAKER_00: The checklist also includes a section on obtaining guardianship or supported decision making.
• 12:00
  SPEAKER_00: This is a topic that can bring up a lot of emotions within the disability community.
• 12:06
  SPEAKER_00: In Massachusetts, guardianship can begin once your child turns 18.
• 12:11
  SPEAKER_00: But there is no one size fits all answer here.
• 12:15
  SPEAKER_00: Every family, every child, and every support need is different.
• 12:20
  SPEAKER_00: Some families pursue full or limited guardianship.
• 12:24
  SPEAKER_00: Others choose supported decision making.
• 12:27
  SPEAKER_00: Others use a mix of tools like durable power of attorney or healthcare proxy.
• 12:33
  SPEAKER_00: You truly have options.
• 12:35
  SPEAKER_00: Organizations like the Ark of Massachusetts and the Federation for Children with Special Needs both host webinars on these topics, which I highly recommend.
• 12:46
  SPEAKER_00: For our family, we did hire a lawyer because I was overwhelmed and needed someone to guide us step by step.
• 12:54
  SPEAKER_00: But many families do this without an attorney.
• 12:57
  SPEAKER_00: Some courthouses even offer a lawyer for the day program to help.
• 13:01
  SPEAKER_00: The key message here: start the conversation early, well before your child turns 18.
• 13:08
  SPEAKER_00: This process takes time and more time than I expected.
• 13:13
  SPEAKER_00: SSI or supplemental security income is another major milestone at age 18.
• 13:20
  SPEAKER_00: If your child received SSI as a minor, they must reapply as an adult.
• 13:26
  SPEAKER_00: Once your child turns 18, they're independently eligible based on their own financial status, not the financial status of their household, even if they are still living at home.
• 13:39
  SPEAKER_00: A few things to know about SSI.
• 13:42
  SPEAKER_00: The process takes time.
• 13:53
  SPEAKER_00: Two, SSI automatically triggers MassHealth eligibility.
• 13:59
  SPEAKER_00: So if your child qualifies for SSI, they automatically become eligible for Medicaid without having to go through the separate Medicaid application process.
• 14:13
  SPEAKER_00: Number three, there may be a confusing denial letter.
• 14:18
  SPEAKER_00: When you apply for SSI, the system first reviews the applicant for SSDI, which is Social Security Disability Insurance.
• 14:38
  SPEAKER_00: So many families panic when they apply for SSI for their child and they receive a letter saying their child was denied SSDI.
• 14:48
  SPEAKER_00: But that is to be expected.
• 14:50
  SPEAKER_00: I always tell parents when you receive that denial letter, look to see what they were denied for.
• 14:57
  SPEAKER_00: And it should say SSDI if it's the first letter that they're receiving.
• 15:02
  SPEAKER_00: After you receive that first SSI denial letter, then you should receive a second letter stating whether your child was denied or received, will be receiving SSI.
• 15:17
  SPEAKER_00: Understanding this helped me stay calm during the waiting process.
• 15:22
  SPEAKER_00: So I always make sure that other parents know this ahead of time.
• 15:27
  SPEAKER_00: I didn't touch on every single checkbox on the turning 18 checklist.
• 15:32
  SPEAKER_00: Some of them are a little bit more self-explanatory than others.
• 15:35
  SPEAKER_00: But if there is one theme across everything about the turning 18 checklist, it's this.
• 16:57
  SPEAKER_00: Until next time, take a deep breath.
• 17:00
  SPEAKER_00: And remember, we're in this together.