Many people have a vision of life as it could or should be. There are sayings like, "You have to believe it to achieve it." to promote the idea of a vision as a first step toward your goals. I am thinking about this because my kind friend says it was my vision for my child, and the energy to get behind it that has brought V so far in the past year. Thank you, Irene.
Someone has to have that vision of what the closest thing to a perfect life would look like, given what limitations are unavoidable. Then, that someone has to get others to believe that it is a goal worth working toward. One person starts the process, but can't achieve it alone. It is truly a team effort to make that vision a reality.
I apply to my daughter's life the same approach I apply to my own. I ask, what would a perfect day look like? What would the ideal partner in life be like? (That one I asked before I met my husband, and I wrote the answer down. About 2 years after I married, I found that description, and realized that the person I had described was the man I was now married to.) What do I want to achieve by the end of the next year? I really believe that you can't get what you really want if you don't know what you really want.
I don't believe that disabled people, or the families that care for them, have to accept only the options that currently exist if those options don't match the vision of the best life possible. If the ideal doesn't exist yet, then be part of the movement to create it. I could not count how many people have said to me, "I could not do what you have done." I don't believe them. No one knows what they can do until they have to. Sometimes it is just putting one foot in front of the other until the end of the day, falling into bed, and getting up to do it all over again the next day. The only option that I could never face, when it comes to my daughter, is giving up. I have feared failure, feared not having the strength to hold it all together, but never stopped actively pursuing something better. Good things in life don't just come knocking on your door, you have to go and get them.
The status quo does not like to be shook up. It is easier to live with what is, then to create something new. Some people's jobs depend on keeping the status quo. Be stubborn. Be persistent. Be persuasive. Be patient. Be flexible and keep an open mind. There is a way, it is just a case of finding it.
Talk to others who have similar concerns and work together. Gather your facts. Talk, write and call people who can make a difference. Believe that things can keep getting better!
Funny, I am talking about a better quality of life for disabled people, but these things really apply to almost any endeavor, don't they?
ABOUT
Maryland offers "The New Directions Waiver" as a means of self-directing state and federal Medicaid dollars for individuals who qualify for supports due to their disability.
This offers the disabled individual the opportunity to use those dollars to best meet their own unique needs. However, it comes with the responsibility to create a plan, a budget, and find your own resources to make the plan a reality.
No centralized source of resources exists. The purpose of this blog is to direct others to resources in our communities and to provide one example of a self-directed plan. (*Caution: The self-directed plan described at the beginning of this blog is for an individual with a 5/5 needs rating, the highest possible rating in Maryland, and therefore the highest budget possible. Most will have a lower rating and a lower budget to work with.) It is also to share firsthand knowledge of experiences that may assist others who self-direct services.
Comments are welcome. Please share your knowledge with others.
For More Information
- Safety Harness for Use in Vehicles
- Autism and Sleep Disorders
- Solving Sleep Challenges with Autistic Children
- State by State list of resources by Autism Speaks
- Special Olympics Montgomery County MD
- Special Needs Trust Information
- Home delivery of incontinence products
- Clothing to prevent disrobing behavior
- Pathfinders for Autism; service provider listings
- Montgomery County Collaboration Council
- Sensory Integration Disorder
- The Ivymount School
- Child Find
- Adapted Aquatics
- The Kennedy Krieger Institute
- Circle of Hope Therapeutic Riding
- Maryland New Directions Waiver
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