A Guide for Individuals with Disabilities, their Parents, and the Professionals Dedicated to Serving Them, 1st Edition
Adam S.U. Gottdank, Ph.D.
Linda O’Neal, M.A.
Casey Sousa, M.S
“I wish I would have known about transition earlier!” I have heard so many parents and families tell me this over the years! This guide is intended to help individuals with disabilities, their families, and dedicated professionals understand the transition from childhood to adulthood. This book provides an extensive outline of the many things you need to know. I have attempted to strike a balance between providing enough detail to really understand how things work, while being concise enough so that families who may not have a lot of spare time to read, can easily access the information they need.
It is my intention that this book will help start a conversation about transition and provide families the information they need to successfully navigate the changes that come with it. As you read through this book you may notice that I lean towards promoting the most independent environment possible for all individuals with disabilities. Throughout my career I have found that most individuals, whether they have a disability or not, want the same things after high school; the ability to live, work, and be included in their community.
Adult to adult.
Just like any other parent, one day you will be building an adult to adult relationship with your adult daughter or son. The nature of your relationship with your child will change. Your child’s disability will play a role in this transition to adulthood, but it will not stop the transition. The purpose of this book is not to push how fast that transition happens. Each person and their parents are going to experience the transition in a unique way. Many parents and students have told me that when they shifted their thinking from an adult – child perspective to an adult – adult viewpoint, that it made a huge difference in how they related and responded to their adult child.
Your role in your adult child’s life will change when your child goes to college and postsecondary schools. You have often been the decision maker in individualized planning meetings such as IEPs for your child. The transition from child to adult can be a difficult, confusing and tense time. An adult student now has the right and responsibility to make decisions about classes they take, the supports used, and the information they share with parents. This can be a very frustrating transition, or one that is filled with excitement and new opportunities. I encourage families to talk about the changing roles and for parents and adult students to discuss their wishes and expectations for communication and interaction during this time.
I have had many parents respond to the idea that they are not the decision maker for their adult children, by saying things like, “Fine! I will just back off and not do anything.” While others have shared, “I don’t care what the college policies say, I’m coming to campus and they are going to talk with me because I’m the parent!” The truth is that most adults with disabilities work very closely with their families on planning and for making decisions. The college faculty and staff will be in the student’s life for a few short years, and family members will be supportive of their loved one the rest of their lives. I suggest a model that strongly supports independence while acknowledging the family member’s on-going role in their loved one’s life.
Parent to parent.
One of the most important things that I tell parents and professionals is, “Connect parents to parents!” Even if you have an outstanding college counselor, or case carrier for a social services type of agency, you cannot beat other parents and families for great information and ideas! Really good case managers and counselors will be happy that you brought an idea to them that you learned from another parent or family. There is so much information out there, and so many resources available, it is not always possible for case managers and counselors to know about them all. Never hesitate to ask about ideas or resources you have learned about from other parents.
Starting to think about transition.
Many people ask me, “When is the right time to apply for services?” My recommendation to families is to gather as much information as possible about transition. It is important to both stay in the moment (focus on current services and needs) and to plan ahead for future needs. Transitions at any point in a person’s life can be very difficult, and for many people with a disability, the transition to their adult life and services can be overwhelming. I find this particularly true if they have waited until they have graduated or are close to graduating. The various service agencies have different entrance requirements, timelines to establish eligibility, required documentation, and appeals processes. Trying to work with too many at one time is very time consuming and can make things very confusing.
Individualized planning.
The concept of individualized planning team meetings has become a hallmark in the field of serving people who have disabilities. Most individuals and their families are familiar with these meetings. Individualized planning meetings have many things in common. They focus on the individual person. It may be helpful to know and understand services and supports that other people with disabilities are receiving, but each person is different, and their plans depend on their own, unique needs and goals. Generally, individualized planning meetings of all kinds now are centered on the person. The job of a planning team, or interdisciplinary team, is to focus on the person’s self-determined goals, identify barriers, determine necessary supports, and develop a plan to meet the person’s needs.
Working with Agencies.
My best recommendations for working with agencies is to be friendly, professional, and assertive. You are an equal professional at the table, and you are the expert regarding your loved one! Many families have expressed frustration and anger with professionals who work for large organizations such as schools and social services agencies: “The agency always says no.” “I can’t get the case manager to call me back.” “I only see them one time per year.” “Nobody has ever explained to me what the agency does. All I know is that they meet with me one time per year.” “I have to file for a fair hearing every time I need something from them.” “They meet with me to complete their required paperwork, and then I do not hear from them again for a year.”
As a person with a disability, or a family member, you want agencies to be responsive to you. Most of us have become angry or frustrated with a school or an agency at one time or another. This may have resulted in raised voices, abruptly hanging up a phone, threats, or vows never to work with that agency again! My advice is to keep the conversation moving, and to act in ways that are more likely to have positive outcomes. Thus, be friendly! Is the person on the other end of the phone call more likely to want to answer that call if you are friendly or if you have an angry tone? Friendly does not mean “sugary sweet” or a friendliness that does not seem genuine. We can disagree with others and still be friendly. A kind tone does not become a barrier to conversation, whereas an angry tone will often shut the other person down.
Parents need to be confident in their professionalism. Nobody knows your loved one better than you, and no-one has spent more time with them. Others may have a different relationship with your child, and they may know them in ways that you do not. Your knowledge and experiences with your loved one are critical for your child, and for those working with your child. You have observations that professionals will benefit from as they work with your child, and as they build relationships with people other than your child. The days where the parent sits at the table and just listens to the professionals are long gone. Be confident in your observations and your recommendations.
Assertiveness is a key tool toward advancing the plans, goals and service needs of your child. Aggressive, passive aggressive, and passive styles make it difficult to have a conversation. An assertive style, paired with a friendly professionalism, helps keep everyone focused and accountable. Honestly, it is hard to say “no” to a person who is friendly, professional and assertive. This approach is more likely to result in people wanting to work with you (and not disappoint you!). An assertive person is not afraid to put something on the table or ask questions. They invite conversation, and do not quickly dismiss ideas that are different than their own. An assertive person wants to hear more information, and to weigh it against their own ideas and information.
There are many examples that reflect assertiveness, and I will share a few with you. You should expect to get your phone calls returned. It is reasonable to expect that you will get a call back within a day or two, and there is certainly no need to wait a week or more to get a call back. Ask people when they plan to get back to you about current issues or questions, and if they do not get back to you by that day, call them the next day. Communicate directly about what you would like, need, or are asking for, and then actively listen (see active listening below) to what is shared with you. Feel free to make your requests. Do not assume that a school or organization is going to say no. Do not be afraid to request extra meetings. Times of transition are particularly complicated, and multiple meetings over a short period of time may be what is needed for a smooth transition.
There is a counseling and psychology term called active listening. Active listening is a powerful tool for showing empathy, and for making sure that people understand each other. A variety of techniques have been developed to facilitate active listening. One common approach is to periodically paraphrase back to a person the most important points they are telling you. In a meeting with a school or agency you might restate the major points of a plan e.g. “If I understand correctly, you will be identifying 3-4 supported employment programs, sending them referral information about my daughter, and asking them to call our family for an intake interview.” The professional you are working with can then clarify any differences in understanding or verify that you are accurate. This includes a request to identify a timeline for each agreed upon action. Active listening can help individuals and families with their assertiveness.
Understanding the roles of agencies, schools, and programs is an important part of advocating for yourself or your loved one. Families are often frustrated with organizations because they misunderstand the purpose of the organization. This means that you will need at least a modest understanding of laws and regulations, and agency guidelines and procedures. You do not have to be an attorney, and school and agency staff should be able to help clarify the laws, regulations, guidelines and procedures that govern what they do. If you ask an agency to pay for a service that they are prohibited to pay for by law, you will become frustrated if you continue to ask for them to pay for the service. If you ask a college to implement something from an IEP that would not be considered a reasonable accommodation, you might be frustrated. Title 5 of the Education Code and the Americans with Disabilities Act governs the college system, and the Individuals with Disabilities Education Act governs the K-12 system. Understand what the agency does, their role, and how they fit into the service delivery system as a whole.
I often share with families my recommendations on friendly, professional and assertive engagement, and then I share with them that I tell professionals the same thing. When you are working with families, be friendly, professional, and assertive. Professionals need to be assertive with getting good information from families, and then seeking out information that will meet the needs of the individual with a disability. The case carrier does not need to know the answer to your question when you ask it. They need to be able to understand what it is that you need or want, and then do a good job following up with the information, coordination of services, and referrals in a timely way. They need to actively listen to families, and it helps to paraphrase or recap the information shared from families. One of the best things a professional can do is spend a little quality time with a family so that they understand the family’s history, struggles, accomplishments, and things the individual and their family value.
I tell professionals to avoid saying, “no,” or “we don’t do that.” There are things that a family may want a person or agency to do that they cannot do, but the best approach is for the professional to say something like, “Tell me more…” Teachers, administrators, and social workers can often come up with ideas, or help a family to develop a plan for what they want. The willingness to talk, share ideas, and make plans tells the family that you (the professional) are there to help even if the solution is not easy or readily apparent. People generally go into teaching, education and social services because they want to help people. It is important for families to remember this, and to appeal to that side of the professional when they are seeking help.
Transition, A Conversation with Parents. Our book is a free resource for anyone to download:
NOCE website, Book Version, Inline Book Version.
Please feel free to share with anyone who you believe will benefit from the book. The book attempts to provide concise information on the following topics:
- Adult to adult relationships
- The Parent’s role in college life
- Support groups
- Advocacy
- Conservatorship
- High school vs college
- Key transitions
- Adult transition programs
- College and postsecondary education: credit and noncredit instruction
- Campus resources
- Reasonable accommodations
- Programs that support inclusion on college campuses
- Programs that support employment
- Community resources
- Service agencies
- Vendored service providers
- Employment
- Independent living
- Transportation
- Individualized planning meetings
- Hearings
- Working effectively with agencies
- Applicable laws
- Helpful websites