Latest / Life Without a Filter: Practical Strategies for Life After 22 / Episode 13: Overwhelmed by Self-Direction? A Checklist to Start Your Participant-Directed Program

Transcript

Episode 13: Overwhelmed by Self-Direction? A Checklist to Start Your Participant-Directed Program · Life Without a Filter: Practical Strategies for Life After 22

• 0:01
  SPEAKER_00: Hi everyone! Parenting can be hard no matter what age or stage you are in.
• 0:07
  SPEAKER_00: But what happens when your child becomes an adult and they will need a lifetime of support?
• 0:12
  SPEAKER_00: I'm your host Cheryl and welcome to the podcast Life Without a Filter.
• 0:17
  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.
• 0:31
  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.
• 0:39
  SPEAKER_00: We'll also have some special guests providing resources and sharing their personal stories of navigating within the adult disability services world.
• 0:48
  SPEAKER_00: Let's embark on this journey together.
• 1:05
  SPEAKER_00: As you know, my full-time job is as an assistive technology consultant, and this time of year is always really busy for me.
• 1:15
  SPEAKER_00: So my full-time job has taken up a bit more time, not leaving as much spare time for me to record these podcasts.
• 1:25
  SPEAKER_00: So thank you for coming back to listen.
• 1:28
  SPEAKER_00: I apologize for the delay, but that's just what life is like.
• 1:34
  SPEAKER_00: So for today's episode, this is one that I've been wanting to record for a while because it comes directly from something that I created for our own family and something that I know many of you have been searching for.
• 1:49
  SPEAKER_00: Last year, I created a handout called The Steps to Launching a Participant Directed Program Model.
• 1:55
  SPEAKER_00: And honestly, it came from frustration.
• 1:59
  SPEAKER_00: When we were setting up Elle's program, I could find plenty of Turning 18 checklists.
• 2:04
  SPEAKER_00: And if you've listened to past podcasts, you know that I've gone over some of my favorites.
• 2:10
  SPEAKER_00: But what I couldn't find was a clear, practical checklist that walked families through how to actually create a participant-directed or self-directed adult program model.
• 2:23
  SPEAKER_00: So, as tends to happen in my life, if I can't find it, I create it.
• 2:29
  SPEAKER_00: So today I'm walking you through that checklist step by step, explaining what each piece really means and helping you see how it all fits together.
• 2:40
  SPEAKER_00: I'm going to put a link to the checklist in the show notes so that you can have your own copy.
• 2:48
  SPEAKER_00: Before we dive in, a quick but important disclaimer.
• 2:53
  SPEAKER_00: This checklist is specific to Massachusetts.
• 2:56
  SPEAKER_00: If you live outside of Massachusetts, the agencies and processes will look different.
• 3:03
  SPEAKER_00: That said, the framework, or the way the steps build on each other, is often very similar.
• 3:10
  SPEAKER_00: Always check with your own state agencies for details specific to where you live.
• 3:16
  SPEAKER_00: Also, as of this recording, this information is up to date.
• 3:21
  SPEAKER_00: But as with all things, there may be updates to the links andor processes.
• 3:27
  SPEAKER_00: If that happens, I will jump back in and update the form.
• 3:33
  SPEAKER_00: If you are more of a visual learner, don't forget you can always hop on over to my YouTube channel.
• 3:40
  SPEAKER_00: For this episode, I will be showing the checklist as I go through it.
• 3:45
  SPEAKER_00: Okay, so let's get started.
• 3:50
  SPEAKER_00: When I created the checklist, I broke it down into three steps with substeps under each.
• 3:57
  SPEAKER_00: The first step will focus on the eligibility process in general for adult services.
• 4:04
  SPEAKER_00: The second step will focus on how to set up the participant directed program, and this is the bulk of the hard work.
• 4:13
  SPEAKER_00: The third step will look at the ongoing process of running a program.
• 4:19
  SPEAKER_00: I think that it is important to realize that while step two is the heart of the program, step three is what keeps it running year after year.
• 4:30
  SPEAKER_00: So while some items, like setting up the employer of record, is a one-and-done, other items like payroll and budgeting and programming needs are going to be daily, weekly, or monthly tasks.
• 4:45
  SPEAKER_00: As I've mentioned before, doing a participant-directed program is like starting and running your own business.
• 4:52
  SPEAKER_00: So there are a lot of moving pieces to it.
• 4:56
  SPEAKER_00: Before we dive in, I just want to let you know that you will not need to do all of this checklist all at once.
• 5:05
  SPEAKER_00: Like the Turning 18 checklist, there are certain items that you do need to complete in a specific order.
• 5:13
  SPEAKER_00: So while there is a lot on the list, you need to remember that just like transition planning checklists, this is a multi-step process and they do build upon each other.
• 5:26
  SPEAKER_00: So let's take a look at step one, program eligibility.
• 5:31
  SPEAKER_00: Before you can plan a program, hire staff, or dream about schedules and goals, there's one essential first step, and that is eligibility.
• 5:42
  SPEAKER_00: Once your child exits the school system, services are no longer an entitlement.
• 5:48
  SPEAKER_00: Adult services are based on eligibility and available funding.
• 5:52
  SPEAKER_00: So this step is really about opening the right doors.
• 5:56
  SPEAKER_00: I covered a lot of this information in more detail in past podcast or blog post episodes.
• 6:03
  SPEAKER_00: So if you haven't had a chance to listen to them, you can always go back and check them out.
• 6:08
  SPEAKER_00: I'll also put the links in the show notes for the specific um episodes.
• 6:15
  SPEAKER_00: The first is the 688 referral.
• 6:18
  SPEAKER_00: And I've gone over this quite a bit, but I do because it is so important.
• 6:25
  SPEAKER_00: As a quick overview, at least two years before graduation or aging out, your school should submit a 688 referral form.
• 6:33
  SPEAKER_00: And this is what starts the adult service conversation.
• 6:37
  SPEAKER_00: If your family is interested in self-direction, it is important that the Department of Developmental Services or DDS is listed as the primary adult agency.
• 6:47
  SPEAKER_00: And as I've said in previous posts, the 688 does not determine eligibility, it simply identifies which adult service agency your child will apply to.
• 6:58
  SPEAKER_00: Again, I've done previous podcasts and blog posts on the 688 referral process, so I strongly encourage you to go back and listen to that for the specific details about that process.
• 7:12
  SPEAKER_00: Once DDS is identified through the 688 process, your child must then apply for adult eligibility.
• 7:21
  SPEAKER_00: Again, even if your child was found eligible as a minor for DDS services, they must reapply as an adult.
• 7:28
  SPEAKER_00: This is a step that sometimes surprises families, so I always like to flag that early.
• 7:35
  SPEAKER_00: The next bullet point says do your homework.
• 7:39
  SPEAKER_00: While you're waiting on eligibility, this is a perfect time to start learning about self-direction.
• 7:46
  SPEAKER_00: Look into the different self-directed program models that are available in your state, what participant-directed programming really looks like day-to-day, and what roles the family takes on in each of the models.
• 8:03
  SPEAKER_00: Doing this early helps you make informed decisions later.
• 8:07
  SPEAKER_00: It also prevents rushed choices once timelines tighten.
• 8:14
  SPEAKER_00: Two especially important pieces during this phase is person-centered planning.
• 8:20
  SPEAKER_00: You know I love person-centered planning.
• 8:23
  SPEAKER_00: By creating a person-centered plan, this gives your person and family a clear picture of your young adult strengths, interests, and long-term vision.
• 8:34
  SPEAKER_00: This becomes the backbone of both your person's vision plan and their ISP later on.
• 8:44
  SPEAKER_00: The other thing has to do with transition assessments and the IEP.
• 8:49
  SPEAKER_00: Make sure the school is completing both formal and informal transition assessments and updating the transition planning form in the IEP.
• 8:59
  SPEAKER_00: These documents help shape what skills your child continues to build on now and what supports they will need post-school.
• 9:08
  SPEAKER_00: The next bullet point talks about working with your DDS transition coordinator.
• 9:14
  SPEAKER_00: Once your child is found eligible for DDS adult services, you'll be assigned a DDS transition coordinator.
• 9:22
  SPEAKER_00: This person will work with you and start discussing which service delivery model makes the most sense, including whether self-direction is a good fit.
• 9:33
  SPEAKER_00: One tip I strongly recommend is to invite your transition coordinator to IEP meetings whenever possible.
• 9:40
  SPEAKER_00: Hearing directly from the school team helps them better understand your child and support smoother planning later.
• 9:49
  SPEAKER_00: Your team will also complete and submit the individualized transition plan, which tells DDS what service model your child plans to pursue once they exit school.
• 10:00
  SPEAKER_00: And throughout this entire process, network.
• 10:04
  SPEAKER_00: Talk to other families, attend trainings and webinars.
• 10:08
  SPEAKER_00: Hearing real experiences can be just as valuable as reading official guidance.
• 10:14
  SPEAKER_00: Now let's take a look at step two, setting up your participant directed program model.
• 10:22
  SPEAKER_00: Once eligibility is in place and you've chosen the participant directed program model, the real building begins.
• 10:30
  SPEAKER_00: Think of this phase as turning ideas into a working program.
• 10:36
  SPEAKER_00: The first thing you're going to be asked to do is to create a vision plan.
• 10:42
  SPEAKER_00: Your vision plan is essentially your program's business plan.
• 10:48
  SPEAKER_00: Using person-centered planning and transition assessments, you'll outline your adults' goals, how their days will be structured, what supports and staff are needed, what resources and community connections will be used, and an estimated budget to support the vision.
• 11:08
  SPEAKER_00: This document guides everything that comes next.
• 11:13
  SPEAKER_00: The next item is the PDP orientation and budget development.
• 11:21
  SPEAKER_00: You'll then attend a participant directed program orientation with your transition coordinator and your DDS support broker.
• 11:30
  SPEAKER_00: This meeting helps refine your vision and budget and clarifies what needs to be in place to launch the program.
• 11:38
  SPEAKER_00: For us, after this point, we transitioned fully to working with our DDS support broker.
• 11:45
  SPEAKER_00: And I'll do a future episode going over the orientation checklist.
• 11:51
  SPEAKER_00: The next bullet point goes over detailed program planning.
• 11:56
  SPEAKER_00: Once your final budget is approved, you can move into detailed planning.
• 12:01
  SPEAKER_00: This can include staffing needs.
• 12:04
  SPEAKER_00: Once you have your budget, you will know how many hours you can pay staff.
• 12:09
  SPEAKER_00: This will go hand in hand with your child's programming needs.
• 12:15
  SPEAKER_00: Once you know how many hours of staffing you have, you can then plan your child's programming needs.
• 12:21
  SPEAKER_00: This is the heart of the program.
• 12:23
  SPEAKER_00: This is where you will use the person-centered plan and vision to go through the three pillars of transition, which are continued education, vocational, and activities of daily living, to create the actual program for your child.
• 12:38
  SPEAKER_00: Also, don't forget about community and recreation involvement.
• 12:43
  SPEAKER_00: And I will be doing future episodes on this topic.
• 12:48
  SPEAKER_00: Once you have an idea of what programming your child will be participating in, you need to schedule it out.
• 12:55
  SPEAKER_00: I personally use a teacher planner book to write out what the month will look like.
• 13:00
  SPEAKER_00: This gave Elle a visual of how much time he had planned during the day.
• 13:05
  SPEAKER_00: This is important because when you are in school mode, you know that you will be picked up at a certain time, be in school for that period of time, and then dropped off at home.
• 13:15
  SPEAKER_00: With a participant-directed program, each day can look different depending on the activities that are planned.
• 13:23
  SPEAKER_00: The next bullet point looks at the employer of record.
• 13:27
  SPEAKER_00: In this step, you will be identifying who the employer of record is, and that is the person responsible for payroll, hiring, onboarding, and managing vendor invoices.
• 13:39
  SPEAKER_00: This may be yourself, this may be the young adult of the program, or this could be another trusted person in your circle of care.
• 13:49
  SPEAKER_00: This role is central to participant-directed programming and comes with a lot of responsibility.
• 13:55
  SPEAKER_00: So it's important to understand it fully.
• 13:59
  SPEAKER_00: During our PDP orientation, we spent a lot of time talking about this, but I'll also do a future episode on this.
• 14:10
  SPEAKER_00: As I mentioned earlier, finding staff is one of the most critical pieces to the plan working.
• 14:16
  SPEAKER_00: Another piece of the staff responsibility is that you will need to write a job description and provide the training.
• 14:23
  SPEAKER_00: You will also have to help onboard the staff with their payroll paperwork.
• 14:28
  SPEAKER_00: You will work closely with the fiscal intermediary and your DDS support broker during this process, so you won't be left alone.
• 14:38
  SPEAKER_00: You will also have another in-person meeting with your DDS support broker to write the first ISP or individual support plan.
• 14:46
  SPEAKER_00: Think of this as the IEP for the adult world.
• 14:50
  SPEAKER_00: The ISP outlines the goals your young adult will work on for the year and it's updated annually.
• 14:58
  SPEAKER_00: I will do future episodes on how to prepare for the ISP, and you guessed it, I also created a checklist to help you prepare for that process.
• 15:10
  SPEAKER_00: And the final step, but not really the final step, is step three.
• 15:16
  SPEAKER_00: This is your ongoing programming needs.
• 15:19
  SPEAKER_00: Once your program is running, the work shifts more into maintenance and growth.
• 15:25
  SPEAKER_00: So your ongoing responsibilities are going to include payroll and invoicing.
• 15:31
  SPEAKER_00: In Massachusetts, payroll occurs every two weeks.
• 15:35
  SPEAKER_00: While the fiscal intermediary will process the payroll, as the employer of record, it is your responsibility to confirm the hours and approve any punches that come in.
• 15:46
  SPEAKER_00: Also, if you are using part of your budget for programming needs, you may need to submit invoices if the vendors are not already in the DDS system.
• 15:56
  SPEAKER_00: While your DDS support broker and fiscal intermediary are going to be monitoring your budget, it is also important that the employer of record be on top of this.
• 16:07
  SPEAKER_00: You want to make sure that you are budgeting appropriately so that you are using your funding at the correct pace so you don't run out of money by the end of the fiscal year.
• 16:17
  SPEAKER_00: And in Massachusetts, the fiscal year starts July 1.
• 16:24
  SPEAKER_00: The other item in this step is continued staff training.
• 16:28
  SPEAKER_00: This is going to occur anytime you hire new staff or if your current staff roles change due to a change in programming or activities.
• 16:38
  SPEAKER_00: You're also going to have regular check-ins with your DDS support broker.
• 16:42
  SPEAKER_00: At a minimum, your DDS support broker should do quarterly budget check-ins with you.
• 16:47
  SPEAKER_00: You will also have your annual ISP, safety plan, and progress note updates and meetings.
• 16:55
  SPEAKER_00: And just like in the earlier steps, continue networking.
• 16:59
  SPEAKER_00: Other families are often your best source of ideas, reassurance, and problem solving.
• 17:05
  SPEAKER_00: I am a part of a couple of Facebook groups and advocacy groups geared towards self-directed programming.
• 17:12
  SPEAKER_00: It helps you feel less alone in the process to know that there are other families that you can talk to.
• 17:19
  SPEAKER_00: I know this can feel like a lot.
• 17:21
  SPEAKER_00: And if you're in the early stages, it's normal to feel overwhelmed.
• 17:26
  SPEAKER_00: That's exactly why I created this checklist, to break the process into manageable steps and help families see that this may be doable for your family one piece at a time.
• 17:39
  SPEAKER_00: Also, if you see this checklist and realize that this may be too much to take on, you may want to talk to your DDS support broker about using agency with choice or finding members of your child's circle of care to help support the family in the process.
• 17:57
  SPEAKER_00: You can download the checklist using the link in the show notes.
• 18:01
  SPEAKER_00: And if you'd like support applying this to your own situation, please reach out to me.
• 18:07
  SPEAKER_00: Sometimes having someone to talk to can make all the difference.
• 18:12
  SPEAKER_00: This checklist will also tie into future episodes where we'll go deeper into topics like staffing, setting up your employer of record, and the ISP process.
• 18:22
  SPEAKER_00: So stay tuned.
• 18:24
  SPEAKER_00: Thanks so much for watching, and I'll see you next time.
• 18:56
  SPEAKER_00: And I'd love to hear from you.
• 18:58
  SPEAKER_00: Send me a message, leave a comment, or connect with me on Instagram or LinkedIn.
• 19:04
  SPEAKER_00: And as always, if you want more resources on transition planning, assistive technology, or self direction, you can find everything on my website.
• 19:14
  SPEAKER_00: Until next time, take care of yourself and remember you're doing an incredible job!