Parents Changing Systems

Today's episode will discuss how parents of children with special needs can help change systems.   This podcast will provide an overview on different kinds of groups parents might wish to be part of as well as discuss leadership opportunities at the local, regional, state and federal levels.

Transcript

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Parents Changing Systems

Hi, my name is Connie Shockley, and I'd like to talk to you today about how parents of children special needs can help change systems. 

 The idea is that when systems are designed or modified, when policies or laws are created or amended, it's not done for us but with us.  As the one whom these systems and laws affect, we want to have a seat at the table to affect positive change for our children and for the families that come after us. 

 This is what being a parent leader is about, weather you are advocating for your own child with one teacher or at the federal level to impact the lives of millions of children.  As parent leaders, as parent stakeholders, we can bring our voices to the table. 

 
Can I be a leader? 

 Every parent has the ability to be a leader. Every parent has the ability to be a stakeholder, and every parent has a story to tell.  

 Consider some of the characteristics of a leader.  All leaders must make decisions on a vast array of topics.  Like leaders, parents make many, many decisions every day.  From the small decisions range from what to eat for breakfast, how to structure bedtime routines, to large decisions such as finding a pediatrician, finding childcare, or how to best support our children’s learning in school, just to name a few.  

 
Now leaders have experience in their field.

 And having a child with special needs or health care needs exposes us to things we may have never been exposed to before.  Things such as the disability world, early intervention, special education, the medical world, and possibly an entire host of governmental systems and agency programs we might have never realized existed before. 

 Our experiences at finding resources in navigating systems is invaluable information.  And that experience and knowledge can lead to involvement because we're the ones accessing the systems and resources so we're the ones with the firsthand experiences of what is working well and where there are barriers.  

 This makes our experiences available and our stories powerful. We can use our experience in these systems to decide how to make changes for the better. 

 One of the things leaders do is communicate.

 And our stories are powerful.  As parents, we have a voice to share and an important story to communicate.  Our valuable experiences can be used to change and improve lives for the better.   This makes us natural stakeholders for many different systems and programs and that can offer a path to become parent leaders. 

 An example of this would be special education.   Today it's considered a given that if a student needs special education, that they can access it along with their general education. That wasn't always the case.  Special education law didn't come about until the mid 1970s, and prior to that, our children with disabilities and healthcare needs were not welcomed and often not allowed in schools. 

Parents were the ones who got together to tell their stories, to tell their children's stories, and to get the laws changed. 

Now, where can I, as a parent, make change? 

As with most things in our lives, change happens where we have passion.  That could be at school, at work, in the community, with the services that we access either private or public services, or on councils, committees, teams, and cohorts.  It could be for your child or for many children.  

So it's important to help match our passions with the kinds of groups or activities that are available. We want to be effective and use our voice where it's needed and where it can make change. 

 I want you to consider what your end goal is and work backwards.  Who is the target audience?  What groups or people might be involved?  What kind of activities might be involved?  What skills might you need to acquire to reach that goal?

For example, there was a dad who wanted to attend a dad’s support group but there were none in his state.  Because he realized there was a gap for fathers of children with special needs to come together and support one another, he decided to create one himself.

As a parent of a child with special needs, you may wish to learn more about special education so you can more fully participate in IEP team decisions and help advocate for your child.  

 As parents, we can also impact systems work.  This often means joining groups that make decisions at a local, regional, state, or federal level.   So, let's talk about some of the different types of groups we might volunteer for or be asked to join.  

There are different ways of describing groups but here are some common ones:  governing groups, advisory groups, leadership groups, planning groups, evaluation groups, and practice groups. 

Be aware that not all groups will carry out all activities listed under their specific groups.  For example, Governing Group A may not carry out all the activities listed under the governing section.  And some groups may carry out various activities from several of the categories listed here.   So, as you encounter various groups, it will be important to find out the scope of their work to see if that fits in with your goals.

 Now let's talk about that Governing Group first. 

 Some of the activities that a governing group may partake in would be to establish bylaws, govern an organization, develop policies, establish goals, communicate with the public and funding sources, employ and evaluate executives, negotiate with employee groups, and allow for community participation. 

 Examples of governing groups would be school boards, city councils, and agency boards.  

 Next is the Advisory Groups. 

 Some of the activities under an advisory group would be to represent a broader group of people, to seek out the views of those affected, advise on needs, bring awareness to issues, help develop action plans, make recommendations, and serve as a resource. 

 So, some examples of groups that would be advisory groups would be committees, panels, and focus groups. 

The next group is the Leadership Groups. 

Some activities you would see here would be to initiate awareness of an emerging or systematic issue, collectively work on targeted issues, conduct listening sessions and public forums, actively plan and implement strategies, attract a collective voice, and monitor entities. 

Now some different leadership groups would be associations, organizations, coalitions, school improvement teams, and various initiatives and grants. 

 Now our next group is the Planning Groups.  

Some of the activities for planning groups would include research and study a specific issue, assess needs and develop priorities, make recommendations, design information, conduct trainings, develop or select a curriculum, develop a channel for communication and feedback, and plan and carry out an activity. 

 Some examples of groups would be committees, work groups, action teams, and IFSP and IEP teams. 

Next is the Evaluation Group.

Activities you would see here would be to create an action plan, collect, display, and analyze data, report results, and continuous monitoring for progress and improvement. 

Examples of groups would be a formal stakeholder group, service improvement teams, and focused monitoring groups. 

The last group is the Practice Group. 

Activities you would see here would be to provide a structure to communicate, learn, and act continually, reach out to others, create opportunities for networking and sharing, enhance participation and connection, discuss emerging or systematic issues, promote interagency connections, share information and solutions, and promote the spread of best practices. 

Examples of groups would be a learning circle or a community of practice.

Another way to commonly distinguish between groups that you may hear about would be if they advise, assist, or advocate. 

Let's first go over some definitions. 

 Definitions for advice are to give advice, to inform, to counsel, to recommend, to suggest, to guide. 

 Definitions for assist are to help, to support, to second, to attend, and to aid

 Definitions for advocacy are to plead the cause of another, to defend or maintain a cause or purpose, and to support or promote the interest of a cause or a group. 

 When we are looking at groups we may potentially wish to join, it’s important to know which one of these categories they fall under and why.  Many government groups by law cannot fall under advocacy so some their scope of work may only fall under advise and assist.  

 When you are considering groups that you want to take apart in, it will be very helpful to ask questions, so you know and understand the group’s scope of work, priorities, boundaries, and your responsibilities as a possible member.  

 If we choose to join various groups and committees, it’s also important to know who we are representing.  If we are representing families of children with disabilities one question to ask is, can we represent our group broadly?  

 Now what do I mean by that?

 For example, I have children with autism.  So, as I attend various committees, can I do so for any child with autism, any child with a disability or health care need or for any child?  Can I broaden my view on not just my family and our experiences, but all families?  Such as families with single parents, parents in rural communities, migrant families, families who speak English as their second language? And can I advocate for their inclusion at the table as well? 

 While none of these questions may apply to your individual goals, it is important to be aware, as we're working with professionals, that we help them keep their eye on family participation in these processes. 

There are other considerations you may wish to ask yourself if you are interested in leadership positions in your community such as participating in committees.  

Do you have the time to participate in this group? 

Is this the right cause or group for you? 

Can you work with the involved agencies at this time in your life? 

Will your ideas and suggestions be considered? 

What can you contribute to this group? 

What do you want to get out of being on this group? 

And is this the right group to help you make the changes you would like to see? 

 
Some things that you may want to ask the group that you're interested in is:

What are the goals of the group? 

What is the group trying to achieve? 

Why is my participation as a parent needed and how will my involvement help? 

What are my duties and responsibilities to the group? 

What is the time commitment? 

Is travel involved? 

Is technology involved, such as Zoom meetings? 

Is there a mentor for parents? 

Is there reimbursement for my time? 

Is there childcare available?

Is an interpreter available? 

Are there bylaws and operating procedures? 

And who is the point of contact for the group? 

There are many ways we as parents can be involved in providing the parent voice and be a needed stakeholder in a variety of agencies and programs across the state. 

The following are some common group types that you might come across in Nebraska:

For early childhood groups this would be:

-    Planning Region Teams and the

-    Early Childhood Interagency Coordinating Council

For school aged groups this would be:

-   the Nebraska Special Education Advisory Council 

-   the Nebraska Planning Council on Developmental Delays

-   School Districts as well may have a variety of committees and councils such as:

         §  A district special education advisory council

         §  Parent Advisory Committees/meetings

         §  Parent Teacher Associations

         §  Parent Teacher Student Organizations

         §  Other committees, associations, or organizations on a variety of topics that may be of interest to you.

For transition age groups, for children 14 and older this would be:

-  the Nebraska Transition Advisory Committee

For medical and health groups that would be:

-  the Family-to-Family Health Information Center Advisory Committee

For mental health groups this would be:

-  the Nebraska State Advisory Committee for Mental Health and 

-  the Nebraska Federation for Children’s Mental Health

For disability groups this would be:

-  the Autism Society of Nebraska

-  the Down Syndrome of Nebraska and

-  The Down Syndrome Alliance of the Midlands

For state boards and commissions there are a large variety that require stakeholders from across the state.  And if you are interested in any of those, I will provide a link in the transcript for you (https://pti-nebraska.org/parent-committees/) or you can contact me.  

For boards of organizations; some of those would be: 

-   the Arc of Nebraska

-   the Ollie Webb Center

-   United Cerebral Palsy

-   The Learning Disabilities Association of Nebraska

-   The National Alliance on Mental Health

-   The Mental Health Association of Nebraska

-   PTI Nebraska

-   Disability Rights Nebraska

-   The Autism Center of Nebraska

-   UNMC/MMI

-   And The Nebraska Centers for Independent Living

For national organizations this would be: 

-   The Division for Early Childhood

-   The Council for Exceptional Children

-   The National Association for the Education of Young Children

-   And the Federation for Children with Special Needs.

You can find a listing of these groups at our website (https://pti-nebraska.org/parent-committees/).  

 This is just an example of what is available to parents who are interested in participating in groups that change systems at all levels.  

 Your voice is important at the local, regional, state, and national levels.  

 
Now you may ask:

 Is there training available for parents?

 Yes, there are several agencies and groups that provide training to parents and that would include PTI Nebraska, Disability Rights Nebraska, First Five of Nebraska, the Arc of Nebraska, and the DD Council. 

 There are also some online trainings, one of them you might look at is the Partners in Policymaking.

 If you are interested in any of the groups I’ve discussed today, please feel free to contact me and I’ll be happy to provide more information and discuss the available groups in more detail.  My contact information is cshockley@pti-nebraska.org, or you can contact me by phone at 402-346-0525 extension two. Thank you so much for joining