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Estate Planning Blog

7 Rules for Successfully Advocating for Your "New" Adult Special Needs Child

March 2, 2020

If you are a parent whose child has special needs, your job as a parent gets more complicated the day they turn 18. On that day they magically become an adult in the eyes of the law.

What happens when a special needs child turns 18?

When a person turns 18, they become an adult in the eyes of the law and are expected to make decisions about their own medical treatment, finances and life in general. In order to make these decisions binding in the legal sense, the person in question has to be deemed competent and able to understand the consequences of the decisions they make.

If your child has disabilities and cannot make these decisions by themselves due to a lack of cognitive capabilities, you will need to be involved in the child’s decision-making process. This can include things like financial decisions and medical affairs. But what steps are needed to allow you to legally do this? 

How to ensure you can advocate for your child once they’re over 18

One of the most important things that enables you to continue to look after your child is timing—start the process early. 

For the best outcome, set everything up before your child turns 18. This will help to avoid gaps in your child’s benefits once they hit the age of 18. 

When thinking about the best way to advocate for your child, you should take into consideration both the pros and cons of:

  • Conservatorship
  • Using a health care power of attorney
  • Using a financial power of attorney 

Each has its own benefits and drawbacks and you should make sure to know in advance what plan is best for your child. 

In considering the legal alternative you should take into account how self-sufficient your child is, as well as the following:

  • Whether your child can communicate their needs and wants regarding their care
  • The degree to which your child can feed, dress and take care of their own basic needs
  • If your child is employable or not
  • Whether outside care is required 
  • The degree to which your child is able to understand the consequences of their own actions
  • How susceptible your child is to undue influence

Powers Of Attorney

7 Rules for Successfully Advocating for Your Adult Special Needs Child

For high functioning adult children, one route you may be able to take is for your child to establish powers of attorney. This is a legal document in which a person (the principal/your child) appoints an individual (the agent/you the parent) to make their decisions for them and take action on their behalf.  

Powers of attorney fall into two categories: 

  1. Advance Directive/ Health Care Power of Attorney, which  
  2. This allows the agent to make decisions about any medical affairs the principal may need, including daily healthcare decisions and serious end-of-life decisions
  3. Durable General Power of Attorney, which  
  4. This allows the agent to make decisions for the principal regarding financial and personal affairs.

Whether power of attorney is a viable option depends on your child’s level of mental capacity.

When you are evaluating whether power of attorney is most appropriate for your child, you should consider your child’s mental capacity for managing his or her affairs going forward. In addition, you should evaluate your child’s susceptibility to undue influence. If your child has a difficult time knowing whether someone is taking advantage of them, the power of attorney may not be the best choice  If your adult child has the ability to execute powers of attorney, then this will be a great step forward in the right direction. However, If your child has a difficult time knowing whether someone is taking advantage of them, the power of attorney may not be the best choice.

Conservatorship

If power of attorney is not a viable option, then to continue to be your child’s advocate after they turn 18,  it may be necessary to establish a conservatorship. 

Conservatorship is the process in which a conservator is appointed to make medical, personal and/or financial decisions on an adult child’s behalf. This includes any decisions regarding living situations and any necessary medical treatment.

7 Rules for Successfully Advocating for Your Adult Special Needs Child

When your child is unable to make cognitive decisions by themselves and is unable to make decisions regarding their financial or medical care, then conservatorship is an appropriate choice. It will allow you, the parent, to continue helping your child directly and stay involved in their daily routine. 

Many attorneys are quick to advise you to go with the conservatorship approach but this should not always be the case. There are other options you can take and at Chubb Law Firm, we encourage you to reach out and review all of your options before making a decision.

The 7 Rules You Need To Follow When Advocating For Your Child

Now that you have an idea of how you can go about advocating for your child once they’re over the age of 18, here are seven rules you should keep in mind when you continue to look after them throughout the years. 

Rule #1 - Expect 'No'

Agencies are programmed to say no. Their default is no - so you need to explain to them why they should say yes and help you out when you need it. It’s a battle and you should expect to appeal any decision that’s made and fight until you get what your child is entitled to.

Rule #2 - Expect Someone New

Don’t go into any government agency expecting to talk to the same person twice - because it simply won’t happen. You’ll be directed to a new person, who won’t know anything about you or your child. Which brings us to the third rule...

Rule #3 - Expect To Explain It Again

Be prepared to start your story from scratch every time you meet or talk to somebody new. Even if they’re there to help you and your child, they probably won’t know anything about you. You’ll end up meeting so many new faces along your journey through government agencies and you’ll have to explain everything to them every. single. time

Rule #4 - Write It Down

If you’re on a call or in a meeting with a case worker, a manager or anybody important to your child’s future wellbeing, be sure to take notes during every conversation. You should always write down:

  • Their name
  • Call back number
  • ID number
  • Date and time of the call

It will help future meetings go a lot more smoothly if you make sure that any information you get can be traced back to its source.

Rule #5 - Find the Federal And State Components

Most state agencies have a federal agency component and most federal agencies have a state agency component. It’s important to remember this because even if you’ve resolved an issue on a federal level doesn’t mean that your issue will be resolved on a state level as well. Be sure to tick all your boxes and cover any loopholes to avoid frustration down the line.

Every agency will be different, meaning varying criteria for granting benefits. Don’t presume that because one agency ruled in your favor that the next one will as well. It’s a constant battle - but even if they say no, you have to keep fighting to get the benefits you and your child deserve.

Rule #6 - Use the Restroom First

When you call an agency or a caseworker, it’s a good idea to use the restroom before you begin and cancel any other upcoming plans you may have. You’re going to be on the phone for a long time and most of it will be on hold. So make sure you’re fully prepared for along wait time.

Rule #7 - When Your Child Turns 18 You Start All Over Again

Unfortunately, you read that right. When your child turns 18 he/she is a legal adult and eligibility rules for all the resources you worked so hard to secure change. Meaning, you must reapply for everything

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At The Chubb Law Firm, our approach to special needs planning is grounded persistence. Although this process will be difficult, we are here to help you make the best decisions for you and your child. 

Call The Chubb Law Firm today at (916) 241-9661 to review your goals and discuss your options.

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