My FIVE BADASS MOVES to Transition My 18-year-old Son to Adulthood
1) I started the guardianship process and will include shared decision making for my son.
We used Chris Brock, Esq as our attorney with the Probate Power area of Colorado Cross Disability Coalition CCDC Probate Power. He has a flat $3,000 fee. I could have done this myself, but opted to use an attorney. You can do it yourself (with the right guidance) to save on legal fees, if desired.
A person can file their own guardianship document. There are several steps including: court forms; letter from a doctor with their opinion on need for guardianship; run and submit a credit report; CAPS state background check; and arrange for a court visitor to meet with you and the potential protected person to give a report to the courts. I could have done all this myself (and so can you) but I chose to hire an attorney for the added peace of mind of knowing everything is done correctly, and to remove the burden of doing everything myself.
I recommend if you are doing it on your own that you observe some guardianship proceedings in your county Probate court. A person can also observe court hearings, with permission from parties, to learn how guardianship works. I look up the court docket, see when some guardianship hearings are scheduled, and then show up. I suggest approaching the parties (if they seem to be getting along) in the hallway and say you are learning about the process for your family member by observing. Ask if they will allow you to ‘peaceably observe and learn,’ offering confidentiality of parties, so you can be comfortable with the process for your loved one. Most of the time people are very kind and will allow you to observe.
These are public proceedings, and if non contested, parties are generally helpful. If not, wait for the next case. The link to the state docket is here Docket Search | Colorado Judicial Branch. Every county uses different letters for different divisions. You can call your county court and ask someone to give you the division code for searching on docket website. They post the type of hearing on docket.
We will integrate a supported decision making agreement with our guardianship filing to ensure our son’s voice is included, that the process for his inclusion is clear for future guardians, and he understands that he will participate in important decisions. Get more info: Supported Decision-Making: What Parents Need to Know
Once our guardianship is completed, we will share the documents with our son’s school, PASA, case manager as well as doctors and therapists.
2) I applied for SSI for my son through the Social Security Administration.
Many 18-year-olds benefit by applying at social security administration (SSA) for Supplemental Security Income (SSI). The DD waiver requires this for the room and board portion of the monthly benefit, which goes to where the member lives (at home, to family or agency if in a residential service).
We plan to do the application on our own. The SSA looks at ability to work, medical conditions are more about linking to impact on work. This is critical to understand and keep in mind.
Colorado Disability Benefits Support at Colorado Easter Seals has information for do-it -yourself applicants. Their online program breaks down the application into small steps. They did a training recently that is worth the view: https://www.youtube.com/watch?v=DFNqGHeOpBw. I highly suggest their resources: https://www.easterseals.com/co/programs-and-services/work/disability-benefits-services/
The maximum amount for 2025 SSI is $967 (How much you could get from SSI | SSA). Room and board for those on SSI IS approximately $697.89 per month, SSI Monthly Statistics, January 2024 - Table 8
Effective 09/30/2024, a recipient’s benefit will be reduced if the person doesn’t pay their fair share of room and board and their monthly payment might be lowered by up to $342.33. So do not fail to submit information about room and board payments. See Supplemental Security Income (SSI) Living Arrangements.
Per this link, Who can get SSI | SSA
Adults and children might be eligible for SSI if they have:
Little or no income, and
Little or no resources, and
A disability, blindness, or are age 65 or older.
Some at 18 may already be getting some social security benefit perhaps due to very low income, large family size or if they are drawing on a parent benefit or survivor benefit. A person can apply for SSA benefits before age 18 as well. Often those are denied and they should definitely re-apply at 18 years of age or over.
I called the main SSA line 1-800-772-1213 and asked them to keep my place in line and call me back. They called me back four hours later and had no phone call appointments available. I will try to call again. They suggested calling early in the morning, and early in the week to increase chances of getting a phone call appointment.
If I cannot get a phone appointment with their 1-800 number, I may walk into our local social security office to request an initial application meeting (phone generally). They discourage walk-ins, but if the phone option is not working, this is available. I always strive to remember how hard the remaining staff have it, after huge federal staffing cuts.
3) I’m managing my son’s HCBS Medicaid waiver transition from the CES to the DD waiver.
I took a few weeks to review and fill out the level of care assessment for adults (for James, it was the SIS but he was one of the last ones to use it. The state transitioned to using the ISLA assessment starting July 1, 2025.) ISLA info is here: https://hcpf.colorado.gov/new-assessment-and-person-centered-support-plan
Excerpt from HCPF ISLA link:
Interim Support Level Assessment (ISLA)
The Colorado Single Assessment (CSA)-Needs Assessment was designed as a more robust and comprehensive replacement for the SIS. However, HCPF has delayed CSA implementation to allow for Colorado’s Case Management ecosystem to stabilize.
HCPF has been working with stakeholders to develop an Interim Support Level Assessment (ISLA) to replace the SIS assessment. The ISLA is based on the components of the CSA which map across to the SIS Support Level Algorithm.
The ISLA will be used to determine the Support Level for adult members newly enrolling on the SLS and DD waivers and interested in using Day Habilitation, Prevocational, Supported Employment services, and/or Residential Habilitation services. The ISLA needs to be completed for members interested in these services who do not currently have a SIS Assessment completed and therefore do not have a Support Level.
HCPF is developing rules to implement the ISLA which includes a new algorithm for the Support Level and will post the algorithm formula table on this webpage in July 2025.
HCPF will be working with trained assessors to conduct a pilot of the assessment from April through June 2025. The ISLA will be implemented July 1, 2025.
On a side note, I am doing the Interim Support Level Assessment (ISLA) with our SIS assessor soon, as practice for them and so I can share more with you. I will share that experience later.
For our son’s assessment, I printed out the SIS assessment tool document that I found on the internet. We took several weeks to read and document, add experiences for each question and be ready to share in the 2.5-3 hour interview with our assessor from our case management agency. It is really important to invest in writing things down, circling the numerical score, in advance. Think of the days of the highest support needs and start there. You will need to have a starting place to talk to the assessor and examples. It is a long meeting and my brain turns off.
They do require at least two people who know the member attend, the member themselves can participate if willing and helpful.
I asked around about PASAs with families I know. I emailed, called and chose the one I felt was responsive and had a lower 20% overhead for 1099 staff. The full list of current PASAs and services they offer are in this google doc on the HCPF website: https://docs.google.com/spreadsheets/d/1H6wku9Zgoxov_MoX7qD0RMu2glFYy3T4b5Z2-_JOmsg/edit?gid=459370783#gid=459370783
Eventually, we did get the SIS score back four weeks later. We had been told two weeks. I wrote eight emails, escalating to supervisors. There was a lack of workflow at our case management agency on who would enter this into his profile and who would communicate the score to the family. I kept inquiring, pragmatically and sharing that we had just a week or two before his 18th birthday. Our regular CES children's case manager said it was the adult case manager’s role. The case manager supervisor said the assessor should have entered it into the record. Then I insisted on getting the score so I could know the rate for my summer support hires. Apparently no one entered it into his profile. Eventually, I did get it, created our new DD service plan myself in a spreadsheet. Then I exported it into a PDF, emailed it to our new DD case manager. We arranged a short call with the new adult case manager who said “well you did all we need to do.”
The next thing to do was the service plan meeting with our case management agency contact. However, I still did not have a case manager the week of his birthday. So I escalated and was assigned one the same day. She emailed me to set up the meeting the next day in order to arrange the services for the first year of his DD waiver. I asked the case manager what date range this first service plan year would span, often it is not a full year. And there was not great clarity, the computer said only 10 months but thought it should be 12.
So, I created our service plan in a spreadsheet with the services, billing codes, amount of units requested for each service and the agency PASA for billing. I did two service plans, one for 10 months and one for 12 to give her options and reduce any risk of not getting the plan in place. I emailed it to her and my agency contact (PASA).
The adult case manager and I did a quick call. “Well, you have all we need, I will enter it so you can sign a document using Docusign and have services begin.”
Then there was no document sent. So I inquired. His 18th birthday had happened that day. Then I was told that there are issues with the case management system accepting it. The Care and Case Management (CCM) system is an electronic case management system maintained by a third-party vendor. The case manager and her supervisor have contacted the CCM help desk.
This means we are now still without PAR generated for the PASA a week after his birthday. So I replied to the escalation thread. And I will email daily and continue to add some people higher up in the org chart to get some more attention on this.
Had I not been proactive with the SIS score scheduling, followed up on the score and then escalated for a case manager assignment, I can imagine how we could go months without service, putting the entire waiver enrollment at risk. Lesson is not to wait but rather, to escalate. You need to know how to communicate to get results fast, and we teach these communications skills in our membership program. Roadmap for the Waiver Journey.
Once our services begin we will convene an interdisciplinary team meeting (IDT) for reviews and if issues arise to address.
4) I’m planning my son’s school transition.
Our son has another year of high school so we haven’t made a school change. He is working to meet his credits to be done next spring. If your loved one is in school and graduating, if you want them to stay through the semester of their 21st birthday, do not accept their high school diploma. They are indeed a high school graduate if they met their required coursework. They can do the ceremony and all. However, the district holds the diploma to continue that person in special education service. They will get that paper diploma when they are ready to leave all school services, before they are 21. If the diploma is accepted, the student no longer can access post high school transition services.
Once they are ready, make sure you get a Summary of Progress draft that you agree with, as this will be a document you may want to have to share with adult service providers like employment services, post secondary education programs and more. Details here: https://www.wrightslaw.com/info/trans.sop.htm
5) I’m handling my son’s medical care transition.
Some medical practices allow disabled young adults to stay on in their practices through college age. Some ask that 18-year-olds transition to adult medical care. Our son is able to stay on with the pediatrician for a few years, although we are checking out some practices already to be prepared.
With Medicaid, it is harder to find specialists who take Medicaid. Some people like choice and opt for open networks and find their own specialists. Some people like systems like hospital systems that refer internally. Some who get SSDI have the option to be in Kaiser as a dual eligible member. Kaiser no longer takes straight Medicaid due to low reimbursements. Medicare has higher reimbursement rates.
So, what’s next for you if your disabled child is transitioning to adulthood?
If your disabled child is not enrolled in a Colorado Medicaid waiver, it’s always a good idea to apply because getting a waiver can help fund transition-age services related to career skills, life skills, and more. If your child already has a Medicaid waiver, you need to get up-to-speed on transitioning your child to a different adult waiver, and learn how the services you’ve been using may be affected. To learn more about waivers, join us for an upcoming live Info Session where I explain how to enroll, or maximize the waiver you already have.
Also, check out my video, with even more details on how I’m managing my own son’s adult transition!