With a little help from the system? Not so much.........

Once you have announced your engagement to the world, the next question you hear is.... When is the big day????  Outwardly, my response is to smile and say we are looking at 2014 and honestly that is truly our goal.  However, the time line is something that is not completely up to us. At every turn we are hit with the realization that there will always be pieces of our lives where we will not have total control. Whether we are depending on someone to assist us with personal care, or transportation, or whether we are depending on equipment to function properly, we are often times at the mercy of someone or something else.

When it comes to day to day life, Kevin and I will always need some assistance from others for our personal care needs.  Even though we make an awesome team and we have figured out how to help each other with activities such as dressing, transferring and toileting, this requires a tremendous amount of time and energy and we both desire to have quality of life that includes much more then meeting our basic needs.  It is for this reason we are dependent on others and more importantly at the mercy of "the system"!

For those of you who may not be aware, getting personal care assistance are not free, nor is it cheap. It is for this reason; we will be relying on funding from State and Federal programs. The Developmental Disabilities Administration (DDA) which is funded by the state of Maryland is supposed to provide services to assist adults who are disabled before the age of 22 live as independent as possible in their community.  However, it is not an easy system to navigate and you have to be ready to go to battle with the "powers that be" to get what you need.

Currently, I receive 15 hours of support services a week from DDA and 14 hours of personal care assistance from a program which is funded by Maryland Medicaid.  The hours that are funded by Medicaid provide me 2 hours of assistance a day which allows me to get up, showered and dressed and ready for work. The other hours give me a chance to do things in the community that I need assistance with, such as go grocery shopping, get a haircut etc... It took me about 10 years to get these services, and it was only because of my mom having medical issues which prevent her from being able to help me that I got services when I did.   It took repeated phone calls, applications, site visits and medical documentation to get the services I have today.

We are currently in the middle of the battle with Prince George's County so that Kevin can get the supports he needs in order to be independent.  He currently does not receive any type of support services where he lives, which we have been told that he needs to have in place prior to moving to Baltimore County which is where we plan to live once we are married. Unfortunately the system is reactive and not proactive.  While getting married is a major life event, it is not considered a major life crisis in the eyes of "the system" and they don't see that as a need for funding services. This is one of the major reasons why we are not in total control of our lives.

 My question for the "powers that be" is if you want individuals with disabilities to have the same opportunities as those without disabilities,why is it that we have to fight with the system to be able to do something many others take for granted? Getting married to the person you love is not supposed to be a battle!

Each turn in our lives brings yet a new obstacle and a new battle, yet we remain determined to figure it out "one way or another!"