Where is everyone?

So I haven’t blogged much lately, but that is not because there is not a lot of things going on in the world of youth transition and CILs. Currently our Statewide Independent Living Council’s Youth Committee is planning our first ever summer youth leadership conference for June. We are way excited to welcome youth leaders from all six of the CILs in the state. We will have a ropes course, leadership games, good food, time to build relationships, and plan for the future of youth advocacy in Utah. We have picked up great ideas from the Montana Youth Leadership Forum and lot’s of other great folks we met in Houston a year ago. If you have any great ideas for our youth conference, or questions about how we are putting our conference together, drop me a line here on the blog.

In the meantime, if you haven’t found your way to the Youth Transition in CILs Facebook page yet you are missing out on daily updates of all the good stuff happening in the world of youth transition and independent living. Get on Facebook and head to Youth Transition in CILs and like the page today. Let’s spread the word about this great resource and get those likes into the hundreds or even the thousands!…


Reaching Out to Youth

Reaching Out to Youth

One of the hats I get to wear for my day job is the one that says I get to be the Chair of the Youth Subcommittee for the Utah Statewide Independent Living Council. This a fairly new hat that I have been given the opportunity to wear and I am still trying to wrap my head around what I need to do (which is ironic since hats are meant to wrap around our heads : ) to be effective in this role.

Right now the main objective of the Youth Subcommittee is to:
Develop/support a statewide effort to provide young adults with disabilities with greater awareness of the Independent Living philosophy and related community services that can support their transition to adulthood, increased independence and full inclusion in the broader community.

We even have some guiding activities to help us reach our objective. They include the following two activities at this point:
Activity 1: Provide existing groups of young adults with disabilities (such as transition classes in local school districts) with regular opportunities to learn about the history of Independent Living, the philosophy of IL, and the services offered by their local Center for Independent Living that can support their transition to adulthood and independent living.

Activity 2: Support the development of new and/or enhancement of existing youth centered activities in at least three of the Utah CIL’s to provide additional opportunities for young adults with disabilities to connect to their local CIL. Activities will be designed to support the involvement of youth in regular CIL activities and services and will encourage youth to become involved in the planning of additional activities/services that will better meet their collective and individual needs.

I will be the first to agree that the objective and activities can be improved as far as clarity and wording, but it is a start for our group as we work to take the big idea and break it into concrete activities that we can accomplish in a relatively short time with little to no budget.

My questions for all the experts out there, or at least …


Foster Youth with Disabilities

Foster Youth with Disabilities

How many people do know that came from an adopted home? What about a foster home that had more than one child in it? What about a foster home that was able to handle a foster child with a disability?

These are issues that many people in our communities, including politicians and local government agencies don’t seem to pay much attention to or think impact individuals in their own hometowns.

When an individual is raised in a foster care setting and does not have access to the resources of a traditional family during their early developmental process, it not only changes the way that individual sees society, but also how the world views that person for the rest of that person’s life.

This is especially true for someone in foster care that might have an emotional or physical disability and feels that they are alone. A report that was recently done by and United Cerebral Palsy found that over 40% of the kids who go into foster care system become dependent on government aid and do not further their education. I can vouch for that outcome as an ex-foster youth myself; this is very scary and terrifying statistic not only on a economic level but also because the data is showing it is getting worse. These youth will be our labor force in the years to come, parents to the next generation of Americans or worse they may become the majority of our prison population because the negative behaviors that they learn in their youth are behaviors that they continue to have in adulthood.

This situation and outcome can be even worse for foster youth that have a disability. All most one 1 in 3 youth in foster care have some type of disability, either emotional, physical from birth or from actions of other people. This number is huge because anyone that knows what it is like to have a disability knows that a stable and reliable support system is one of the key elements to help with day to day life and when a person doesn’t even have …


Resource Spotlight

Resource Spotlight

When we talk about transition issues for young adults with disabilities we often first think about the transition from school to work or from living at home to living independently. There is however, another important area of transition to think about when working with young adults who are transitioning to adulthood; this is the transition from pediatric care to adult healthcare providers.

Many youth with disabilities and/or complex medical issues have developed strong collaborative ties with pediatric care providers over many years of working together. Unfortunately, as young adults approach adulthood these pediatric providers are not always able to continue to provide this level of care to older patients. Although I know of many pediatricians that have continued to work with certain patients well into their 30’s, because of the strength of the relationship, this is often not practical from a regular practice perspective. This means that young adults need to plan for transitioning to an adult care provider that they can be comfortable with and who can continue to work collaboratively with them to address sometimes complex medical issues that the provider may not have a lot of experience with.

To help young adults, their families and other support personnel such as CIL staff help navigate this healthcare transition, The National Health Care Transition Center has created the Got Transition? website.

In their own words:
“Got Transition? is a national resource for health care professionals, families, youth, and state policy makers focusing on a young adult’s transition from pediatric to adult health care. This site serves as the basis for an information exchange about health care transition, particularly as pertaining to youth with special health care needs.

Transition tools and tips and other resources are available under each of the main categories of Youth, Family, Providers and States. These resources will grow and develop so visit us often.

Why This? Why Now?
Less than half of US youth with special health care needs receive the health care transition supports and services they need, according to the 2005-06 National Survey of Children with Special Health Care Needs.

Health care professionals,


Peer-Mentoring and You


Chances are at some point in your life you had a mentor/friend who took the time to take you by the hand (literally, for some of us) and helped you discover what you were truly capable of.

Mentoring programs, particularly peer-mentoring programs can be a tremendously effective way to help young adults “develop skills, knowledge, confidence and motivation” (Partners for Youth with Disabilities- Best Practices for Mentoring Youth with Disabilities).

While looking through my bookshelf for resources to help with my own peer-mentoring project, I came across a wonderful resource that I picked up a few years ago, it was a hardcopy of the Partners for Youth with Disabilities (PYD) “Best Practices for Mentoring Youth with Disabilities”. This is a very well written and comprehensive guide to developing a peer-mentoring program for youth with disabilities.

Naturally, in today’s world the next thing I did was check out the PYD website to see what else they have put together since they did this guide several years ago. I was very happy to see that the original guide is available electronically along with several additional resources to support your efforts to establish a worthwhile peer-mentoring program at your CIL. Take some time to look through the PYD site, it will be worth it.

Also, don’t forget about the “Building an Effective, Comprehensive CIL Youth Program” training April 10-12 in Houston, Texas. Brush up on your peer-mentoring questions and come learn about:

• How “nothing about us without us” is especially important when involving youth in CIL programs
• What services and programs successful CILs are offering to support youth transition
• How successful CILs design, fund, staff, and operate their youth transition programs
• How to support transition from school to work, post-secondary education, adult health care, and independent living

The target audience for this training is CIL staff involved in youth transition services and supports, and those interested in expanding services in their centers and increasing the capacity of the youth in their communities.

For those of you currently running fantastic peer-mentoring programs with the youth in your CIL, drop …


L.E.A.R.N. to Get Youth Involved!


Growing up in a small town with a disability was difficult. There weren’t many other young people who were going through what I was going through. Sure, I found ways to connect with my peers but there was always something missing. None of my peers understood the concept of “going blind” or being “legally blind.” When I was 17 I joined the “sheltered” workforce at a blind-work organization. While this was only a stepping-stone for me to gain experience and get through college, I also found a group of peers who understood my unique struggle. Through this organization I helped start a support group for youth who faced vision-related barriers. This is where I gained a true peer experience. I learned much from my peers and even mentored many individuals through some significant struggles. I was empowered… and there was no stopping me.

Currently I work at Access to Independence, an independent living center (ILC) in central New York. For the past five years, I have worked to build peer support initiatives youth and have developed some excellent tools. Getting youth involved in ILC activities can be as simple as helping a young person to L.E.A.R.N. That’s Lead, Empower, Advocate, Recreate, and Network!

Lead: Leadership is perhaps one of the most powerful ways to get young people involved. Through leadership on a board of directors, peer group facilitator, volunteer, or even a staff member, can boost their confidence and build essential life and career skills. Not to mention, you’re giving a young person a voice in how services are run for young people. That is the independent living philosophy!

Empower: Empowering young people comes from helping a young person find “internal value.” By this I mean believing in your ability to see what you want and go after it with motivated energy. It means knowing that you, as a young person, can make a difference and have the power to improve a community. It means you want to help others become empowered.

Advocate: It is not easy having a disability. There are stigmas and barriers we face on a daily …


Strategic Planning vs Wishing on a Star


Since the last time I posted to this blog (which was far too long ago…sorry), I have been eyeball deep in strategic planning around a variety of Youth Transition issues. In particular, I have spent much of my time during the last few months drafting and refining a strategic plan designed to increase the number of opportunities that students with intellectual disabilities have to participate in fully inclusive college experiences in Utah. This has been a fascinating process, meeting with all of the different stakeholders, trying to get a sense of what is already available and what people and agencies are already doing in this area, figuring out what barriers exist and coming up with strategic goals that will help all of the stakeholders take the next step forward so that we can see measurable change.

Strategic Planning can be a messy and time consuming process, as those of you who have done it before can attest too. However, what is the alternative to going through a thoughtful and detailed strategic planning process? Perhaps wishful thinking on a magic star that things will change for the better would be an easier way to plan for the future, but as those of us who have taken that approach at times can confirm, it is not always the most effective or reliable planning method. Sometimes you wish on the wrong star and other times someone beats you to the star you are wishing on and all of the wishes have been used up.

Thinking about all of this reminds me of the well-known saying: “If you fail to plan…you plan to fail”. Thankfully, I had access to some remarkable planning tools and resources to help me with the strategic planning I have been doing around postsecondary issues here in Utah. First, I had a team of other deeply committed stakeholders helping me gather and process information about what was happening across the state and where we should go next. Second, I had access to peers across the country through the Think College Project, an initiative of the Institute for Community Inclusion …

Youth and Self-Advocacy

The Future of Advocacy


With the National Forum on Disability Issues ( coming up this Friday I have been helping to plan a viewing party for the staff where I work. Between this and all of the other political happenings going on at every level I have been thinking a lot about policy and advocacy. Some very important laws and policies that improve civil rights and services for people with disabilities, and their families, have been passed in the past 40 years. Many of these improvements were put in place largely due to the tireless advocacy efforts of individuals with disabilities and their allies, who joined together to advocate for change. As we look forward to the next 40 years of change, who are the advocates that will continue to carry the torch of inclusion and civil rights? What is your center doing to be involved in training this next generation of disability advocates?

Last week I had the opportunity to meet with the new “Advocacy Specialist” at my local CIL. I and a few other folks that have been involved in advocacy and policy work for the past few years were there to help the new person get a sense of where to start. Our discussion made me think that we all have to start somewhere as advocates and that start can be made much more effective and smooth when we have a mentor and good resources to rely on.

As you work with the youth in your center to become more effective self-advocates, and advocates for disability rights, how do you approach the task? Do you use a curriculum or other standardized approach, or do you play it by ear? What has worked well for you and what resources do you recommend to help get people involved in the issues (local, state, federal)? I would love to hear what others are doing in this area. Please take a few minutes and share your thoughts.

I’ll start: here is a resource that I think is worth recommending “The Capitol Insider” put out by the ARC. This is an excellent site with a lot …