In the early 1950s, some remarkable parents and advocates got together in communities all over the country. They shared their visions and together envisioned a world in which children with developmental disabilities would no longer be shunned by society. They would not be pushed to the background or treated as invisible. They would not be denied an education, be denied their hopes and dreams.

Together, they created new visions. In communities around the country, including right here in Cass and Pulaski Counties, those visions blossomed into educational programs, vocational support programs and supported living programs.

In each and every community, depending on the needs of the community, programs were established to sustain and support persons with developmental disabilities.

50 years ago, local communities made decisions about providing support for individuals in the best way possible for their own circumstances. Now, 50 years later, we believe the ability to maintain those decisions should remain local.

RIGHT NOW, I AM RECEIVING SUPPORT

I have been diagnosed with a developmental disability, and I have been approved for funding. I am receiving support. I can make lots of choices.

I can live at home with my family or live on my own.
I can have a job in a supported work environment like the workshop or have a job in the community.
I can enjoy recreational activities in a setting with others like me or enjoy activities in the community with all kinds of folks.
I can participate in adult educational programs geared just for me or sign up for adult education classes in the community.

BUT SOMETHING IS HAPPENING…

It’s possible that people in Indianapolis will make changes in rules and regulations that will take away some of my choices.

It’s possible that the fees will no longer support workshops and I will have to take a job in the community or stay home.

It’s possible that the fees will no longer support programs for people with multiple disabilities, like our TRIP program. What will happen to all of my friends who use that program?

It’s possible that the fees will no longer support educational programs geared for me, like the Life Skills classes I can now take. I’m learning how to budget my money and how to email my friends. I’m learning how to use public transportation. I’m learning how to live in my community without my folks always having to help. Where will I learn things if I can’t take these classes?

It’s possible that the fees will support only socialization and recreation programs a few hours each week. What will I do for the rest of the time?

ON THE OTHER HAND…

It’s possible that the fees will continue to pay for all the support services I can possibly choose.

It’s also possible that the fees will pay for the services, but the budget they give me will not cover everything I need.

TODAY, IT’S WHAT WE DON’T KNOW

We don’t know what those fees will cover. On the one hand, it appears that the fees for services will cause providers to lose nearly 70% of the funds available for services.

On the other hand, the individual budgets may be high enough to cover most of the costs for SOME people.

This is clear: not everyone who is receiving support will be able to keep all of the services they are now receiving.

THERE IS STILL A WAITING LIST

I’m one of the lucky ones. I am receiving support. Thousands are still waiting.

The waiting list has grown. In 1998, there were 6,000 on the list. In 2004, there were 15,500 on the list. Now, in 2008, there are 17.000 on the list. That is an increase of 183% in 10 years.

Some young adults are being told that they will be served right away. They will not have to go on the list. They can just apply for services.

For them, this is wonderful news. The ones eligible for this immediate service are those young men and women who are graduating this year from special education classes.

The bad news? Individuals who have been on the list for 10 years or more will have to wait a bit longer before they will receive services.

And the rest of the bad news? I might be spending more time in front of the television set, and less time in meaningful activities.

AND WE DON’T KNOW WHEN WE WILL KNOW

These changes were scheduled to start on July 1, 2008. As this newsletter goes to the printer, we don’t know if the changes will start then, or if they will start in January 2009.

For me, it’s one thing to wait and worry. For Peak Community Services, it’s another. They have to make plans somehow. They have to have a budget, and they have to know what to tell their staff.

I WOULD LIKE TO ASK YOU TO HELP

But as this newsletter goes to print, I don’t know what to ask you to do. If you want to help, and you aren’t on the “advocate email list” that Peak Community Services has, call and get on that list. When we know what we want you to do, you’ll be notified, and you can help.

THIS COMMUNITY HAS BEEN GOOD TO ME

Thank you for everything you have done, and for all the years you have stood by me and my friends. Living in this community has been a blessing, because you really have cared about us for over 50 years.

This “open letter” is written from the standpoint of several individuals receiving support from various programs offered at Peak Community Services.

The transition from school to the workforce - or from the family home to a home of your own - is difficult for any young adult. For a young adult with a developmental disability, it is even more problematic.

Limited knowledge of funding options can lead to limited options and opportunity for your son or daughter upon graduation.

Get the facts. Start early. Don’t wait until your child is in or just leaving high school.

MEDICAID WAIVER FUNDING

Medicaid Waivers provide funding for services to support your child as s/he learns life skills. Medicaid Waiver funding provides:

Support for your family.

Support in the community.

Support in a home of your own.

Support developing job skills.

Support maintaining employment.

THE WAITING LIST

The waiting time - the time you will wait from when your son or daughter is determined to be eligible for services until he or she will start receiving services - can be 10 years or longer.

It is crucial that children, youth, young adults, middle aged adults, or anyone diagnosed with a developmental disability apply to be placed on the waiting list NOW so that the opportunity to receive those services is an option. Learn early and plan early so that funding will be available when it is actually needed.

HOW LONG IS THE LIST?

Since 1998, the waiting list for services has grown by 183%. The list is now 17,000 people strong. The government’s response is: 1) to potentially cut fees to providers, making it difficult or impossible to provide services to individuals who are already receiving services, and 2) to potentially cut budgets to those individuals who are already receiving services, seriously hampering their ability to pay for the services they need.

Many families have chosen not to put their sons and daughters on the waiting list. Either they have not considered the services that will be needed in the future or they know the wait will be terribly long.

Did you know that, according to The ADAPT Community of Austin, Texas, Indiana is among the 10 worst states in the nation regarding the delivery of home and community services to persons with developmental disabilities? Let’s change it!

Get On The List! Let’s make sure elected officials will listen to us! There is power in numbers. Change will only happen when those who are elected into office know how big the voting potential is.