Transition from Child Based to Adult Based Services in Behavioral Health

From Child to Adult

Transition to adulthood is difficult for all young adults, but if you are a young adult who utilizes Behavioral Health or Substance Use Disorder services it can be confusing and overwhelming. It is also difficult for the parents and guardians who support them. Moving from child based to adult based services takes some preparation to make it easier and it ideally should start a year or more before the shift. Depending on the intensity of need and the way that the disorder is affecting the young adult’s decision making skills, it can be helpful for you, as the guardian, to check and see if your youth’s current providers have transition support.

  • If transition planning is not available, you can go and visit companion adult based service providers to get information on how their system of support works. You can also ask how to find a new provider.
  • If this is a young adult on Medicaid, the regional Behavioral Health Organization should have contact information and locations for these providers.
  • If you are under private pay or employer based insurance, you will need to reach out to your youth’s current behavior health provider and/or therapist to see if they have some recommendations or can do a transition plan of care.
  • If you go to two different providers for therapy and medication management you will need to connect with both.

Behavioral health and substance use disorder privacy laws have some very strict rules in place around shared information concerning the youth’s treatment plan, and if you are not a part of a wraparound or WISe program, you may have a more difficult time with providers responding to your inquiries. Ask for generalized information that can be applied to anyone about how the system works. This keeps it from being about a specific person and makes it easier for behavioral health professionals to share their processes with you.

The young adult accessing these services may want to participate in this process themselves. This can allow you to be a side-by-side support and they can give permission for you to be with them as they explore. Understand that once they are shifted to adult services, unless you have guardianship or they are determined to be incompetent or a danger to themselves or others, you will no longer have any decision-making power. Doing ground work ahead of time allows for a smoother transition and helps them maintain care longer.

Things to look at when planning for transition:

  • Wait times to see the provider.
  • Is there medication management out of the same office?
  • Do they have an adult based wraparound type system?
  • How accessible is the building and is it on a bus or transit line?
  • Does the adult provider have a relationship with the current provider?
  • Who is another trusted support person if your young adult no longer wishes you as a parent or guardian to be involved?
  • What community supports need to be in place to for your young adult to be successful (smart phone apps, state community living supports like food stamps, SSI, disability bus pass, etc.)?

The key to prepping is creating a communication pathway ahead of time so that you can support your young adult as they transition. In the Behavioral Health System, at age 13 youth can demand that they make their own decisions in their care. This means starting at age 11 or 12 can help them in making smarter choices where their own care is concerned. Working to become a trusted support for both the therapists and your youth, as well as starting the conversations early, makes all the difference in the world.

World Psychiatry

US National Library of Medicine

Mental Health Services for Young People

Transition Between Child and Adolescent Mental Health 

So you’re at College…What Next?

Navigating the Higher Education Environment When You Live With Disability

Research over the past 20 years indicates that a fairly high percentage of college students with disability choose not to disclose that disability to a college administration.  They are tired of “being labeled” or singled out because of their situation and simply want to participate in the same way as students without disability.  This doesn’t necessarily mean hiding their disability (pretty difficult to hide a mobility device or service animal), they’ve just “had it” with permissions, meetings, and forms.

At the same time, many students get onto campus wanting not to disclose, and discover that yes, they *do* have to jump through the hoops at Disability Services in order to access strategic supports.

[If you’ve already met with the disability/access services office at your campus, and provided documents to receive services and equipment, you can skip this next section]

If you’re just beginning the access process, this is what you have to do:

  • Be able to clearly explain your disability and your specific requirements for services and equipment. It’s better to ask for more than you might expect to get, but be aware of the possibility that if the school can’t provide a service or equipment and you absolutely need it, you and your family will have to bear the expense, or you will have to find a school where such services/equipment is available.
  • Make an appointment at Disability/Access Services
  • Fill out any forms requesting services and equipment (usually available online)
  • Make certain you have all required documentation.

Below is an example of typical required documentation.  It can vary from school to school, and you will find a similar list again, usually on the school’s website under “Disability/Access Services”.

“In order for a student to receive an educational accommodation due to the presence of a disability, documentation from a professional service provider must be obtained. Professional providers may include, but not necessarily be limited to, those identified below:

Disability Category         Professional Provider

ADD ADHD                        Psychologist/Psychiatrist

Emotional disability       Psychologist/Psychiatrist

Auditory disability          Certified Otologist, Audiologist

Visual disability               Ophthalmologist, Certified Optometrist

Learning disability          Psychologist, Neuropsychologist, Learning Disability Specialist

Physical disability           Medical Doctor, Physical Therapist, Orthopedic Surgeon, Doctor of Rehabilitation

Chronic health impairment         Medical Doctor, Medical Specialist

Documentation from a professional service provider must be in writing, must be current within three years, and must include the following when appropriate:

A description of the student’s disability and how he/she is affected educationally by the presence of the disabling condition.

Identification of any tests or assessments administered to the student.

For students identified as having a specific learning disability, the assessment must be specific to the student, comprehensive, and include:

  • Aptitude
  • Achievement
  • Assessment of the student’s information processing capabilities,
  • Raw data and interpretation of the data
  • Specific educational recommendations based on the data interpreted.
  • Effect on the student’s ability to complete a course of study.
  • Suggestions for educational accommodations that will provide equal access to programs, services, and activities…”

-Source: Tacoma Community College, Tacoma, WA at: http://www.tacomacc.edu/resourcesandservices/accessservices/forms/

What Happens After the Appointment with Disability Services?

After the appointment, you’ll get an official notification from the Disability/Access Services administration informing you of your eligibility for services, and if eligible, what services you can expect to receive.

You may have to place additional calls to Disability/Access Services to determine when services begin, where to pick up equipment, arrange meetings with note takers, etc.

At most schools, YOU are responsible for notifying each of your instructors (every semester!) of your requirements for accommodations. Hang on to that eligibility letter–better yet, make multiple copies to hand out to instructors.  Having known many college instructors, I suggest you don’t send this by email alone. Hard copy rules in this case.

Informing instructors about accommodations means giving plenty of notice for them to order alternatives to conventional textbooks. If you’re doing this at the beginning of a semester, expect delays getting the material. This sometimes happens even when you had your appointment with Disability/Access Services many months in advance of the semester. If so, you may have to negotiate with your instructor for extensions on assignments.

Make sure you understand the limits of what the school is providing for assistive technology. For instance, many schools limit the loan of portable screen-readers to specified uses or time frames. You may have to provide your own equipment or software outside those limits.

Some Disability/Access offices are one-stop shopping, and can set you up with tutors, any necessary remedial courses and on-campus health services (including mental/emotional health).  At other schools, it’s very fragmented, and YOU will have to find these services separately, even when they are related to your disability.

Most such services are available through departments labeled “Student Services”, “Student Success Services”, “Counseling”, “Health Services” and the like.  If you are unsure of where to find services, you can contact staff in an office usually labeled “Dean of Student Services”.  College Deans are top-level administrators who oversee a number of related departments.  Their staff are knowledgeable about all departments under that Dean’s authority.

Who to Talk with About Issues

What if you have issues with instructors not allowing or ignoring your accommodations?

Your first step should be to re-issue your eligibility letter to that instructor, following up by requesting the Disability/Access office to notify the instructor of your eligibility through their office. If this doesn’t resolve the issue, all schools accepting federal funds will have a Section 504 Coordinator (or similar title) on campus. This person is probably on staff in the Disability/Access Services office, wearing additional hats. Complaints regarding your access to materials, instruction, and class activities go to this person.

If you’re not using a Section 504 plan but still require accommodations, all schools accepting federal funds will also have an ADA Coordinator (or similar title). This person may or may not be located in the Disability/Access Services office but that office will be able to direct you to them.

[The ADA Coordinator is also the person to see when you have an unresolved issue around physical access on campus or with any program offered away from the main campus.]

Complaints about instructors *not* relating to your accommodations are usually addressed to the Dean of Academic Affairs (yes, another Dean), or the Chairperson of the academic department for that instructor.

In most cases, it’s appropriate to discuss any concerns with your instructor before escalating a concern or complaint up the line.

Navigating the Campus:

If your disability includes physical limitations you’re already aware of how many barriers exist to full participation in any environment. Many, many schools were built prior to ADA, and their facilities reflect lots of poor accessibility design. [I attended a school that only had accessible restrooms on every other floor, and in each case those restrooms were at the opposite end of the hallway from the elevators! At another school, I had classes in a building that underwent (planned) replacement of the only building elevator during the height of the semester].

If possible, move onto campus (or visit the campus) early for some “dry runs”. Acquire a campus map to figure out the quickest to get to classes, dining halls and sports facilities.

Make friends with the administrators working at Campus Police. (They’re the ones who assign parking spaces and they also know the best and quickest ways around grounds and buildings.)

It also doesn’t hurt to know the phone number for the folks who run the facilities. This department is sometimes called Physical Plant, Facilities, or Buildings and Grounds. They’re really useful when the accessible restroom is out of order, when the elevator breaks down, and when you want to know if certain areas are clear of snow and ice.

Lots of Fuss-Why Bother?

All this navigation of a college’s bureaucracy seems overwhelming, listed here all at once. Don’t get discouraged. I’ve listed these possibilities here so you can make notes for yourself and be prepared. With luck, you’ll never need to contact some of these offices or people. On the other hand, “entropy happens”—things sometimes go sour. Knowledge is power!

Self-Advocacy: Becoming an Active Member in Your Community

If you have ever stood up and defended the rights of yourself or others you were acting as an advocate.

Self-advocacy means taking the responsibility for telling others what you need and want in a respectful and direct way.   Anyone can be a self-advocate and while speaking up for you or someone else can make you feel empowered, independent and more in charge of decisions for your life, it is not always an easy thing to learn how to do. It takes time and practice.

Good self-advocates are informed about the topic they are sharing with others.  They speak clearly and calmly and they listen to others and consider the information that they are hearing as well.

Times that you might need to be a self-advocate could be:

  • In your IEP meeting if you are in high school
  • When you ask for accommodations for classes in high school or college
  • Asking for accommodations on the job.
  • Asking for assistance and accommodations so that you can be involved in your community.

Things you need to know to become a better self-advocate:

  • Understand your rights and responsibilities.
  • Make decisions based on what you want or need
  • Say yes or no
  • Know that its ok to change your mind
  • Know that its ok to make mistakes
  • Express your feelings in a safe and reasonable way
  • Know who your trusted support persons in your community are that you can ask for help when needed.
  • Be safe
  • Be treated with dignity and respect at all times
  • Learn to be assertive without being aggressive or disrespectful

It is important to have confidence in yourself, you know more than you may realize.  Being prepared is important and some things to remember are:

  • The goal is the wellbeing of the person you are advocating for
  • Communication skills, respond don’t react. Avoid seeing others as the enemy.  Try to be diplomatic
  • Learn how to read IEP
  • Maintain good records and request everything in writing.
  • Take notes or have someone take notes during meetings.
  • Don’t attend meetings alone. If you can bring someone with you for support and to help take notes, it really helps.  Try not to attend meetings alone.
  • Remember you are teaching by modeling good behavior and effective communication. Your efforts won’t just affect yourself and/or your loved one, but the community as whole as well.
  • Assert yourself with common courtesy but be firm. Begin with the end in mind and don’t let yourself get side tracked.

Another important thing to do in order to be a good self-advocate is getting to know your community.  What kind of resources are there that can help you?  You may gain knowledge and support from connecting with resources like: local support groups, advocacy agencies, faith communities, community associations, and private providers.

Each county has resources that can connect you to the special needs community.  PAVE has great programs and resources to help individuals build and strengthen self-advocacy skills such as Community Inclusion for Everyone (CIE) and Parent Training and Information (PTI).  You can go to PAVE’s website at www.wapave.org  to learn about additional programs.  Also, you can connect with your local DDA coordinator to get a listing of other local agencies and support groups/programs in your area such as Parent to Parent, People First, and others.  Attending local meetings is a way of connecting with like-minded people who have some of the same passions you do and can help you gain a deeper understanding of local relevant issues.

Becoming a strong self-advocate is key in achieving successful independence and healthy living as an adult in your community.  Always remember there are many people who are ready and willing to help you, so don’t be afraid to reach out and ask for assistance along the way!

‘What’s wrong with your brother?’

As a second grade student, this was a daunting question.

I knew Josh was different, but I didn’t know how to adequately explain the nature of his disability; he was just Josh, my brother. I was fortunate enough to grow up in an unwaveringly accepting and unconditionally loving family, as well as being a rather outspoken child, so I was able to converse with my parents about what exactly made Josh different and to find the best way to address these questions.

According to the Arc of the United States, an estimated seven million ‘typically developing’ American children have a sibling with a disability. These siblings often face many of the same challenges and joys as their parents, but they are also faced with their own set of unique tribulations. When a child with a disability is welcomed into the world an array of resources and supports become available to help educate and support parents as they begin their journey into the world of disability activism, but often times in the whirlwind of change and adaptation siblings aren’t directly addressed.

Growing up with a sibling with a disability gave me the opportunity to connect with others in similar situations to share stories and ask questions. We each share an unconditional love for our siblings—laughing about comical things they say or do, joking about the things that annoy us, the sort of stories you would expect to hear about ‘typical’ siblings. Amongst these conversations we also expressed the difficulties of having such a sibling; what it was like to be embarrassed to go out into public for fear of an outburst that would attract unwanted attention, dealing with less of our parents’ attention because our sibling required more, not knowing how to explain to our friends why they couldn’t come over to play, and most of all, dealing with the guilt of having these feelings in the first place.

In my opinion, my parents provided my brothers and myself with the most beneficial forms of support. We maintained open lines of communication and it was acknowledged and accepted that Josh had a disability. We were also provided with the scientific facts about his disability, so when posed with questions by uncertain peers we felt confident giving an intelligent answer. Often times that confidence put others insecurities at ease. Our feelings were always acknowledged and validated, and we learned as a family what it was that each member needed to feel appreciated and supported.