Well, that depends on who “they” are.

First, it should always be a team including you & your child making this decision. The fancy label for that is person-centered planning where the need and goals of the individual determine the plan. No one size fits all. The rest of the team will be the service coordinator/case manager, and maybe the provider.

Next, there should be a standardized tool to calculate time the individual needs help with doing or learning to do their ADLs (Activities of Daily Living).

– For HCS & CFC, the tool is Form 8510, HCS/TxHmL CFC PAS/HAB Assessment. If you click on this link, there are INSTRUCTIONS about for filling out this Form.

– For CLASS, the tool is Form 3596, PAS/Habilitation Plan – CLASS/DBMD/CFC.

Now the team needs to work together to complete the tool. As the only person actually working with your child directly who is part of this team, you are the one to communicate what they need help with, how long it takes, and how much support they need. The team should ask clarifying questions to thoroughly document the individual’s deficits, but they shouldn’t try to minimize or reduce the amount of support you are describing. THIS IS NOT THE TIME FOR YOU TO MINIMIZE HOW MUCH YOU DO. I recommend picturing a typical person of the same age as your child and how they would complete each ADL. Then describe everything that’s different for your child.

For example, my daughter is 21 years old and she has Down syndrome. I’m so proud of all the things she CAN do. But there are lots of differences from her daily life and a junior going to college.

• Showering: a junior in college doesn’t communicate with other adults about showering at all. My daughter needs reminders to shower. She needs support to reach her 2,000 body parts and thoroughly rinse her hair. She only shaves with assistance. She cannot reach the shower head to change the spray setting.
• Transportation: a junior in college can manage her own transportation – either by driving or traveling on public transportation. My daughter’s cognitive level is similar to a 13-15 year old in regard to financial and safety issues. She does not have a drivers license. She needs assistance to arrange rides and confirm they are provided by a safe person.

Clearly, I can go on. This way of thinking helps us identify the Personal Assistance Services (PAS) and Habilitation (Hab) that our child needs to succeed each day.

Often, I meet adults with special needs who need lots of support but are only receiving 1/3-1/2 of what they need. I ask about the tool used to determine the hours they receive, and the tool has never been reviewed by or with them.

To address this:

1. Ask for a copy of the tool from your service coordinator/case manager. Both of the Instructions for Form 8510 & Form 3596 state “The individual/LAR, …and all SPT members must review, sign and date the plan.”
2. While you are waiting for a copy, complete a copy of the tool yourself. Determine what hours are justified by the level of support your child needs.
3. Make your request for the increase of hours. If you got a copy of the tool, you can guide the team through the incorrect areas. Or just provide them with the copy you completed.
4. Expect the professionals on the team to try to give you less. They will try to tell you they can only do the calculation for 5 days per week. They will tell you weird things about specific areas. Always look back at the Instructions for the tool to guide you.
5. Know your right to a denial and appeal. In Medicaid programs, you have the right to be officially told “no” vs just talked into reducing your request. When you are told “no”, you should get both the denial and the right to appeal in writing.

When Arabella was receiving CFC PAS/Hab through STARKids Medicaid (under Texas Children’s Health Plan), she was arbitrarily reduced from 35 hrs per week to 25 hrs per week.

When I asked why, I received a non-person centered answer – “everyone is getting less hours.” I asked for the tool that was used to justify her needs, and was told it was not allowed to be shared with me.

So I requested to appeal this decisions, while also completing the Form 8510 myself and submitting it as justification for my original request for 35 hrs.

I received a letter before the Appeal Hearing stating that they were reversing the decision to reduce the hours, based on the information I submitted.

If you need more support regarding this topic, consider scheduling a Group Education presentation to go over the a specific PAS/Hab tool together or an Individual Coaching session to review or complete the tool for your child.

Or at least I will try!

Over the years, I would learn things as a case manager or a special needs mom that seemed like really good new that people did not know…

So I did my best to get the information out!

2008, I started by creating Texas Medicaid Waivers Explained and dumping everything I learn there. It was originally to create a credible place to send people to get info on all the Texas Medicaid waiver interest lists.

Then I went to support groups doing presentations about Medicaid waivers, Social Security SSI, Texas Medicaid Buy In for Children, and more

When I returned from a year in Maine and got a new caseload of CLASS Case Managment clients, I created this a newsletter to provide info on all the gaps in information I saw in my caseload in small amounts over time

In 2022, I realized that many of my peers (parent of adults with special needs) had not communicated their plans and important details about their children in a written form that could be referenced if they become incapicitated or pass away. So I created the Life and Legacy Plan templates and hosted the Caregiver Workspace to set aside time to complete these documents together.

All of these resource are still available, but I have used all the experiences to design the Individual Service options.

Before you read this, stop and ask yourself what are you trying to achieve by having a guardian appointed for your adult child with special needs?

(I would love to read your answers. If you want to share, click here.)

Guardianship is a legal proceeding where a medical professional tells a judge that an individual is INCAPACITATED and unable to make decisions.

This a huge statement and is used to admit people who are endangering themselves into places they won’t agree to go – hospitals or psychiatric facilities. It’s the last resort.

So why are parents AUTOMATICALLY doing it at 18 years old? We are taught to presume competence, to watch our kids continue to learn for a lifetime…

And we know that even the lowest verbal ability does not indicate how perceptive someone is!

What is the message someone receives when you have them declared incapacitated?

“But what about their safety? Without a guardian, they can be taken advantage of!”

Guardianship is not going to prevent abuse, neglect, and exploitation. Humans prevent those things.

Texas did a great thing in 2009 when they funded a pilot project with DADS & the Arc of San Angelo to test Guardianship outcomes vs an alternative called Supported Decision Making.

The outcomes were so good without guardianship that, in 2015, Texas Legislature mandated that probate courts consider alternatives to guardianshipand supports and services before a guardianship is created.

Don’t be driven to expensive and harmful options out of fear, when the state has provide a tool to help you collaborate with your child.

An article compiling resources on this topic available here.

Recently, I’ve been observing some parents of “high functioning” individuals with intellectual disabilities delay the application for Social Security SSI (Supplemental Security Income).

I think this is a mistake.

I’m assuming they figure “we can always do it later”.

But that’s not exactly true.

Social Security manages multiple systems and those systems don’t always play well together.

Social Security RSDI (Retirement, Survivors, and Disability Insurance) is an insurance paid by Employees & Employers out of payroll taxes. When you qualify for a benefit under RSDI, you join the federal Medicare healthcare system. Benefits are based on earnings and not on assets.

Social Security SSI (Supplemental Security Income) is a welfare program for individuals who cannot work due to a disability and is not related to paying into the RSDI system. Benefits are effected both by income but also assets. Most importantly, when you qualify for a financial benefit, you are given access to state Medicaid healthcare and other state programs accessed through Medicaid.

Unless an individual is on a trajectory to live an independent life, I think postponing (and possibly eliminating) access to SSI is a mistake. Certain benefits such as 1619(b) are only available if you qualified for SSI at least for a month.

One of the most common solutions I’m asked to share is how to get Social Security to pay for full SSI amount to an individual.

Most often, the issue is very straight forward. And it all depends on how the employee at Social Security asks the questions during the initial SSI application interview.

Of course, the day before an individuals turns 18, they are a child and part of the family household.

And the next day they are a legal adult and a household of one. But they might be a household with $0.

So the question is “who is paying for them to have housing on that first day of their 18th year?”

Unless the parents kicked them out, they are the default source of housing and the free housing seen as a resource (aka income) for the individual.

Social Security shows an example of how they see this here. If someone is getting $627 of $941 (2023 SSI max), then their living situation has been documented if they are getting free food and housing.

The next scenarios described by Social Security may or may not effect the benefits. In this case, Social Security asks for lots of household info – who all lives in the house, who much is the food, shelter, and utilities. Then they divide these costs equally.

• If the individual receiving SSI is paying their fair share, then they aren’t getting any resources for free. SSI will not be reduced.
• If the individual receiving SSI is paying less than their fair share, then they are getting the portion they are not paying for free = it is seen as a resource and their SSI will be adjusted by this “income”.

Instead of letting Social Security determine your resource and delve into the extended household finances, the simplest solution is a rental agreement. Put in writing how much the individual will pay to live in the household, just as you would for anyone who rented property that you own. This assigns a value that the individual can afford to a specific location, and is not intertwined with the finances of the property as a whole or the other property tenants.

Providing a written document to Social Security is always the best way to ensure the correct information is on file, and not up to interpretation based on verbal communication.

Here’s a sample rental agreement.