In my previous post (click here), I discussed some of the transition checklists that we used during our transition journey. As part of the “201” series, I am doing a deeper dive into some of the areas of the checklists. I already discussed the “Turning 18 Checklist” in more detail. Today we are going to take a deeper dive into “The Arc of Massachusetts: Transition from School to Adult Life Timeline” handout.
What I liked about this checklist:
- This resource starts at age 13, so at the very beginning of your transition journey according to IDEA and/or your state. So unlike the “Turning 18 Checklist”, which just focused on items you can begin to do once your adult child turns 18, this handout gives a longer range, more detailed approach to your transition planning.
- It looks at the whole person. The “Turning 18 Checklist” is more of a to-do list, while The Arc of Massachusetts timeline takes a more holistic look at things you should be thinking about and discussing with your team during IEP and transition meetings, in addition to the “to-do’s” that are on the list.
What I would have changed about the handout:
- There is only 1 thing I would have changed and it had to do with the format of the handout only, not the information within it. There is a lot of repetition of things to do over the years, just re-worded differently. Those items tended to be the ones that focused on making connections, encouraging friendships and relationships, and continuing to have transition assessments. For me personally, it would have been nice to have a heading that said “ongoing over the years” for these items, then under each specific age item really focus on what items/tasks you can only do once you have hit that age.
Some of the items that I found most helpful to me within the timeline:
- Age 13, 14, 15
- Learn about Massachusetts Laws and Federal laws regarding transition: it is so important to know what your child’s rights are related to transition services, including when your child will age out (official graduation date vs. staying until 22).
- Learn about the Transition Planning Form and how it functions within the IEP
- Ask the school what they are using for transition assessments: at some point during the time your child is considered transition age, they will most likely have 1 (maybe even 2), 3-year re-evaluations. Ask the school what specific transition assessments they use to help determine transition goals.
- Investigate the use of technology to assist with independence and communication: this is a big one for me. As an Assistive Technology Consultant, I have found over the years that people overlook this area, and then may look at it when their child is in their senior year or about to age out. There are so many ways that people can use technology to assist in their transition goals, make sure that your team is looking at assistive technology for that and not just for accessing academics.
- Age 16&17
- Person-Centered Planning: while I believe that person centered planning should be the cornerstone all along, under this age heading, they really focus on self-advocacy, envisioning the future, creating transition portfolios and writing out a 5 year plan. These can all be achieved by using the person centered planning model. In future posts I will go over different resources that you can use to help your child create their person centered plan.
- Travel training: this is one that we continue to struggle with. L took the mini-bus to and from school but during Covid, we switched to driving him to school. He was then getting a little too comfortable with only having mom drive him around, so we switched to driving him into school in the morning (he is not a morning person and that extra time to get ready was worth the trade off of driving him in) and he took the bus home. We really wanted him to focus on expanding his travel options and L was extremely resistant to doing travel training on the GATRA (which is our local public transportation bus). Now that he is older, we are going to explore travel training with Uber via their Uber Caregiver model, and taking the commuter rail and subway into Boston.
- Ask your school when they are planning on doing the 688 Referral. This form is usually completed 2 years before your child will be leaving school.
- Start researching the over 18 programs (SSI, Guardianship, Supported Decision Making). Start attending webinars and/or reaching out to the agencies so that you have a better idea of what you need to be doing to get ready for applying for these services once your child turns 18.
- Age 18
- In addition to everything listed in the Turning 18 checklist, you want to make sure that a representative from the adult service agency that you applied to via the 688 referral begins to attend the IEP meetings. You want to be able to put a face to the name of their newest client, and you want to be able to get a sense of what may be available for your child as they transition into one of those programs. They will also be able to suggest what transition goals could be worked on to prepare your child for the adult service world. I have found via conversations with people that the level of participation is dependent on who you have as your coordinator. But make sure that you advocate to have them present at the meetings, and if they cannot attend the meeting, to schedule a separate meeting so that you can be having these conversations with them.
- Age 20-21
- An Individual Transition Plan (ITP) meeting will occur no later than 9 months prior to graduation/aging out. By the time of this meeting you should know what adult service agency your child will be moving to when they leave public school, and those are the representatives that will help you and the team with creating the Individual Transition Plan. They will submit the ITP to the Transitional Advisory Committee, who then approves or rejects the proposed plan.
- Start reaching out to adult service agencies: 12 months out is when you will really start your search for adult service placements, but I started researching different programs when L turned 18. I primarily asked our friends who were ahead of L where they were going and what they liked/didn’t like. I also started joining parent transition groups on Facebook.
- One piece of great advice I received about this process was that not every agency is for everyone…..some examples are you will see a place and love it and your kid will hate it. You will have families that have their adult child in a program that they love and when you visit it you may realize it isn’t the right fit for your kid. THAT IS OK!!!!
- You will set up appointments to tour the facilities (when we went through this process, they varied on if the tour was just for the parent first, then the child, or both at the same time). Because we were exploring this option in September 2021, there were 5 agencies in our “catchment” area, and after our Individual Transition Plan meeting, we as a team narrowed it down to 3 agencies that would be a good fit for Liam’s goals within the plan. Of the 3 agencies, only 1 was taking tours, but not referrals. We were able to go out of our catchment area for 1 agency, and we went on 2 tours, but Liam was not vibing with what he saw (even though his teacher and I loved it), so that was off the table.
- Start looking for an adult primary care physician and dentist: I would actually recommend to start doing this around age 16-17. Liam’s pediatric dentist “graduates” their patients when they turn 18, and his pediatricians office recently implemented that their patients “graduate” at age 22. We were able to find a dentist without any issue, but it took us a year to find a new PCP who would take our insurance. Not every practice follows those rules, so I would recommend asking your doctors what their practice policy is so that you are not surprised by it and have enough time to find a new doctor or at least get on a wait list.
- Massachusetts Rehabilitation Commission offers a program called Pre-ETS (Pre-Employment Transition Services) to students beginning at age 14. MRC will contract with agencies that then work with specific school districts to provide transition training resources. The services offered and how they are implemented seem to vary by agency, but this is a great resource for all students, even if they are not interested in joining the workforce. It will help with self-advocacy skills and other “soft skills” related to employment that the students can take with them if they focus on more of a volunteer path.
- Age 22+
- The first bullet point says that “Transition from school to adult services should be complete.”. Post 2020, this may not be a realistic statement. I am a member of several parent groups and am still seeing posts about students who have aged out at 22 and are still waiting for an appropriate place post their graduation date. When we realized in August that a placement would not be available for L in September, because we had also been planning for self direction in parallel to looking at CBDS programs, we were able to quickly shift to the PDP model. But even so, we didn’t get our final approval and funding until November, so we had 2 full months where we were in “limbo” related to funding.
- Another extremely important piece of information in that first bullet point is ” Adult services are not an entitlement. Adult services are based on availability and are subject to funding by the legislature.” After spending about 18 years within the entitlement services of public education, it can be a tough realization that in the adult world, entitlement is no longer the standard. So while L was found eligible for adult services via DDS, he was not entitled to having a placement. Even with the self-direction program, he is not entitled to a specific budget amount; that is contingent primarily on the funding level that the state receives in general, and then how much DDS approves for L’s program, regardless of our “plan”. I may get feedback for saying this, but you almost have to have a “Plan B” in effect on how you are going to support your adult child if you cannot find a placement for them or to fill in the blanks if they receive a partial placement. This is also why it is important to have applied with other agencies (ie SSI/SSDI, AFC, SNAP, etc) so that you have other funding sources to assist you while waiting for an adult service placement.
Questions?? Leave a comment! There is a lot of information on this post since it ranges in age from 13-22, but the more informed you can be about the process, the better you will be able to advocate for your child.
-Cheryl
#Life Without a Filter 