Advocating for Your Child: How to Get the Support You Need

After spending so much time with your child, you can tell when something isn’t right. Maybe there’s something different about their personality. Or their behavior has changed. Or they seem down when they’re normally upbeat. Or their grades have started to drop. 

When you see the signs or feel it in your gut, your natural reaction is to take action. But what if you don’t know what the next step is?

One of the hardest parts of parenthood is knowing your child is struggling and not knowing how to help them. You’re an expert on your child, not programs or providers. It can be hard to know where to turn for the right kind of help.

This blog is a guide for advocating for your child. The purpose is to empower parents like you to proactively respond to your child’s needs by connecting with the people and resources to help you find the right services and providers for your child.

How to Determine Which Services to Ask For

You’ve recognized you need help getting your child help. Now what? 

We recommend you start with documentation. Reading Rockets outlines the materials you need to create a comprehensive plan - a “roadmap” - for your advocacy on behalf of your child. Create a dedicated folder where you can keep relevant information and take notes. This is where you can write down 1) what your child’s struggles are, 2) any actions you have taken and their outcomes, and 3) record comments from your child’s teachers that may be relevant. 

To gather information and build out your records, we recommend regular communication with your child’s teachers so you can stay in front of potential challenges or problems. As you have conversations with your child’s teachers, either over the phone, virtually, or in person, take notes. (We suggest using some of the questions in this checklist from the U.S. Department of Education to facilitate your conversations.) When your child comes home with graded classwork, don’t throw it out! Save examples that show patterns or demonstrate abilities and challenges. Maintaining this documentation folder creates a holistic profile of your child that will help you and support personnel determine which services would help your child.

Additionally, it’s important for you to be open and honest about the situation. The people you’re reaching out to for help are not judging you–they also want what’s best for your child. Being upfront in your conversations and documentation helps teachers, doctors, and other professionals see the big picture and better understand how they can support you on your journey to help your child.

If you’re still having difficulties understanding and conveying your child’s struggles either in your own documentation or to support personnel, consider some self-directed learning. There are many resources available–find a format that works best for you. Maybe you check out a book from the library, subscribe to an online journal, listen to podcasts, or join a parent support group. Educate yourself to increase your understanding and comfort level with terminology. Filling in your knowledge gaps can help you ask more targeted questions so you get the clarification and direction you need to determine what would help your child.

Here are some free resources we recommend:

• ASQ Calculator from Ages and Stages
• Pediatric Symptom Checklist from Bright Futures
• Parent Test: Your Child’s Mental Health from Mental Health America

How to Find Providers for the Services Your Child Needs

You’ve gathered your documentation, now what? 

Since you’re already in regular contact with your child’s teacher, they make a great starting point. Because they are likely more familiar with services available at your school and the support staff, they can guide you to the people on campus or in the district you should reach out to, such as a counselor, diagnostician, or special education director.

Outside of school, your child’s pediatrician is a valuable resource. With connections to your community and other medical providers, they should be able to refer you to psychologists, psychiatrists, and more. Because they have probably known you and your child longer than your child’s teacher and because they are familiar with your child’s medical history, they offer a different but valuable perspective on your child’s challenges. Their suggestions or recommendations could lead you to services or providers that are either not available or that you can access faster than through your child’s school.

Lean into the self-directed learning you’re doing and the network you’ve built. As you educate yourself through research, you gain a sense of what services might work for your child; you can then reach out to your network, like parents in your support group, and ask them if they have any experience with certain providers or if there are any providers they would recommend. Chances are they will be happy to share their experiences and save you from the trial and error of going through the process alone.

Finally, explore your state’s Department of Health to see if they provide any specialized services. In Wisconsin, there are three programs specifically designed to help families with complex needs get the help they need.

Comprehensive Community Services (CCS) 

For families with complex mental health or alcohol or other drug abuse (AODA). 

This program connects families with a service facilitator who helps coordinate mental health and AODA services for the children and adults in their program. 

Rather than trying to figure out services that will fit, they take over that role and help connect your family to services that are pre-screened to support your specific challenges. This program is for individuals with complex needs who benefit from wraparound services. 

Some examples of services that CCS can connect a family to are

• Licensed mental health professionals - therapists, psychologists, and counselors.
• Medication management providers - psychiatrists and nurse practitioners with a focus on medication management for mental health
• Psychoeducation - education that is focused on mental health topics. This can be for the child, the parent, or both (that’s The Foster Lane!)
• Skills Workers - providers who help the client work on daily living skills
• Mentors - providers who offer a supportive role to help the client implement skills in a low-pressure fashion
• And more

Children’s Long-Term Support Program (CLTS)

For families with children with complex behavioral and/or medical needs. 

Children can enroll in this program on its own or in conjunction with CCS. This program is a “payor of last resort,” meaning they pay for things that are otherwise uncovered by Medicaid but that are crucial for the consumer. This can include alternative therapies, such as equine therapy (a favorite for many!), physical health providers who support emotion regulation, respite, medical supplies, community integration, grief counseling, and more. 

The goal of CLTS is to provide support and services so that the person is able to remain in the family home, rather than needing to be supported in an out-of-home placement.

Katie Beckett Medicaid

For families with children who have exceptional medical or mental health needs but whose income is too high for other Medicaid programs. 

Katie Beckett Medicaid helps children who:

• Have complex medical needs.
• Have long-term disabilities.
• Have mental health needs.
• Want to receive home and community-based services instead of living in a hospital or institution.

Children may qualify even if:

• They aren’t eligible for other Medicaid programs because of their parents’ or guardians’ income or assets.
• They’re covered by private health insurance.

Parenting is easier with a team, which is what these programs provide for families. Each of these programs has a service facilitator to connect families to providers who meet their specific needs. This is often a lifeline for parents with children with complex needs or parents who want to advocate for their children but struggle with putting that in action. These are the programs that bring families to The Foster Lane and our Empowerment Parenting services from across Wisconsin.

How to Know if a Provider is a Good Fit

You leveraged the resources available to you and have scheduled an appointment with a provider. The pressure is on to get help for your child, but you don’t want to settle for just anyone. Like Goldilocks, you may need to try a few on for size before you find one that’s a good fit for you and your child.

As you go through this process of qualifying providers, you want to evaluate them. They’ll of course be asking you questions about your child–that documentation folder should help you complete intake paperwork more quickly!–but don’t miss out on your opportunity to interview them.

Here are questions we suggest you use in your evaluation:

1. Who do you share information with and when?
2. How do you communicate with parents? 
1. What is the frequency?
2. What information will you accept from me?
3. How do you respond to parents’ emails?
4. Will you speak with me before or after sessions- or in a parent-only session? If so, how often are those scheduled?
5. How do you speak with co-parents? If there are tricky dynamics?
3. What is your documentation process like?
4. How do you balance client privacy and that relationship with parenting with parents?
5. What do you expect for support from me pre-session, during the session, and post-session?
6. Will you share things that are working so I can use the strategies at home?
1. Do you provide parenting education sessions for just the parents?
2. If so, how often are those scheduled?
3. If not, who do you partner with so I can expand my skills to match my child’s skills growth?
7. How long is your “getting comfortable/relationship building phase” and how do you support the transition out of that phase into trickier topics?
8. How trained are you in trauma and the latest research in child development?
9. What modalities do you use to work with children? And what do you shift to if your primary modality is not a good fit for my child?
10. How much time do you spend teaching actionable skills to my child versus processing and exploring thought patterns?
11. How long do you typically work with clients, and what is the primary reason people leave services with you?
12. Tell me about your experience working with children with my child’s identified struggles.
13. Tell me about how you transition from the initial reason for referral to subsequently identified areas to support.
14. How often do you meet with clients? 
15. What is the session duration? 
16. At what point do you make a shift to the scheduling?
17. What is your process to discharge? 
1. How long does that process take and how do you support the child in that process?
18. How do you work with clients with different beliefs than your own? (Note: Even if your beliefs align, it is important to see how they separate their personal beliefs from the direction of services and goal setting for clients.)

Record their responses in your roadmap to refer back to and use to determine which provider best meets your expectations and your child’s needs.

How to Advocate for Yourself and Your Child to Get the Answers You Need

Child advocacy doesn’t end once your child receives services. Even if you have an open line of communication with your child’s teacher and have a service provider on your side, it’s necessary to stay involved and be a co-leader in your child’s care.

As the parent and co-leader, you have a level of control you should not be afraid to exercise. It might be tempting to take everything teachers and providers say at face value and allow them to direct your child’s support services–they are the experts after all. But remember: you are the expert in your child! 

Instead of allowing a provider to tell you what your child needs, open a dialogue with them so you can plan out services together. When you work cooperatively with your provider, you each bring your specialized knowledge and experiences to the table, allowing you to co-create a plan for care and services that will help your child and fit your needs. If your provider has a “It’s my way or the highway” attitude, take the highway. You won’t have to start over from scratch–refer back to the notes you took in your roadmap and reach out to another provider on your list.

How to Quit a Service Provider 

Quitting is not a dirty word, especially when it comes to advocating for your child. There are two typical reasons for disengaging with a service provider: you and/or your child’s needs aren’t being met or you and/or your child have achieved the goals of the service. Neither is a rejection, and both are valid.

They’re Not Meeting Your Needs

If the provider is meeting the needs of your child but you feel some tension or friction in your working relationship, quitting may not be the right answer. Consider seeking out a provider for yourself to help you work through your feelings so you can continue to support your child in their relationship with that provider instead of forcing them to start over with someone new.  

Sometimes a provider’s pacing may seem off to you - maybe you feel they’re moving too fast or too slow for your child. Instead of immediately pulling the plug, see if the provider is open to feedback (hopefully you know they are after asking them your evaluation questions!). If they are, you can discuss making adjustments with them. Perhaps they have legitimate reasons for the pacing of services and you need to pause services for your child while you and the provider work through this together. But if they are unwilling to work with you so you are in alignment, it might be time to part ways.

If at any time your relationship with a provider changes for the worse, it’s OK for you to leave. Finding a new provider so your child continues to get the support they need is a form of advocacy.

You’re Ready to “Graduate”

When your child has reached the threshold of what a provider can do for them, there’s no longer a reason to stay. Speak with them about next steps. Does your child need additional services? Is there another service provider they can refer you to to help your child reach their next goal? Regardless of the outcome, this graduation should be a celebration like any other and not cause for disappointment. It’s important to remember that each provider has their own skill level and approach; learning to notice when progress has been made and understanding that further progress may be more likely with either a different modality or provider is key to maintaining a positive relationship with mental health service for the long term.

The Foster Lane Difference: Helping You Advocate for Your Child

Are you new to The Foster Lane? We aren’t your typical mental health service providers. 

We are parent coaches passionate about helping families laugh more and yell less. We do that by working closely with you to understand and tailor a solution to your unique needs, strengths, values, beliefs, and culture. 

Unlike other mental health professionals, we don’t have an ego. We don’t claim to have all the answers. Instead, our approach is to ask you questions to get us to the solution that’s best for your family.  

Learn more about The Foster Lane to see if it’s the right fit for your family: https://www.thefosterlane.com/site/about.