A Slot

It's been ten long years.  Years spent missing supports that could have really made a difference.  Not enough assistive technology - not enough environmental modifications - not enough family training - not enough recreation - not enough personal support.  But all that has now changed.

Ashley has finally been granted a 'slot' on our state's Medicaid Developmental Disabilities waiver.

I shouldn't complain too much though because had she been on the waiting list for the Intellectual Disabilities waiver, we might be looking at even another ten years.

I met today with Ashley's service facilitator for the waiver, and we laid out a menu of services that will serve to benefit Ashley immensely.  From increased attendant hours to assistive technology to high intensity day support to prevocational services and family caregiver training and even environmental (home) modifications that would benefit Ashley as well as the opportunity to obtain even more services in the future.  All these things will go a long way towards preparing Ashley for the future, and will also go a long way to removing a small part of the worry I face each and every day.

I know there may be people who say we take advantage of taxpayer money - that we consume more than we should in the way of services.  Well, I'm a taxpayer also, and in addition to caring for my children, I am more than willing to have my tax dollars support your family member with a disability.  Ashley, and the many other people with disabilities in our communities (and note, I said 'in our communities', because that is exactly where they belong), are a vital part of this thing we call the human race.  They have needs, they have wants, and they have rights - JUST LIKE EVERYONE ELSE.  They have skills, they have talents, and they have relationships filled with love and respect - JUST LIKE EVERYONE ELSE.

Neither Ashley nor I sit home, do nothing, and just reap the financial rewards of public assistance.  I work, and I fully expect her to work when she leaves school.  We volunteer, we give back, and we strive to make the world a better place for everyone. 

At this moment in time, Ashley needs more supports than a person without disabilities.  She has a right to those supports, and she deserves them.  She and I both realize that we are blessed that the supports are available, and neither of us will ever take them for granted.

At this moment in time, a small portion of the weight on my shoulders has lifted.  For that, I am eternally grateful.

Ready Yet?

(picture courtesy of AFP/Getty Images)

When the tragedy of September 11th occurred, I immediately started thinking about disaster planning for my family. When Hurricane Katrina struck, I again started thinking about disaster planning. Today, after the events in Japan, I am still thinking and still not doing.

I’ve asked myself what would I do if the disaster struck while my children and I were separated – me at work, them at school for instance. How would the schools handle things, and how would I get reunited with my children?

I remember on September 11th that I felt compelled to leave work, and rush to the sides of my children. I knew I would just feel better if they were all with me, not spread around three different school buildings. A similar condition still exists today – my five children are in three different schools. How, and in what order would I go to get them, if I even could get to them? How would they all handle the waiting for me, or worse, how would they handle being injured? Could I depend on the school staff to comfort my children and make sure they were as safe as possible? Unfortunately, I think the answer to that question, at least for my three children with disabilities, is NO.

In two of the three schools attended by my children, the teachers of children labeled with severe disabilities are advised not to take their kids outside for fire drills. So, how will the teachers and the students know when the loud buzzer is signaling a drill or an actual event? The cynical me thinks the disaster plan for children with disabilities is to sacrifice them in favor of getting the non-disabled to a safe place.

But what if I was at home with my children when a disaster struck. I asked myself do I have a disaster plan in place, and especially one that addresses the significant needs of my children with disabilities? The answer is no, unless you count the jumbled list of thoughts in my head a disaster plan. So, while I am questioning and suggesting and demanding that my school system develop a comprehensive disaster plan, I need to do the same thing myself at home.

It’s been almost ten years since the September 11th attacks, and still I have done nothing to prepare myself and my family for a disaster. Perhaps the events in Japan will be the impetus I need. I certainly hope so.

After googling a bit, I found some good resources to help me down that path. They are listed below and I suggest everyone, especially families who have family members with special needs, take the time to review them. (Due to high traffic related to the Japan disaster, the Red Cross site may be down intermittently.)

• Red Cross Disaster Preparedness for People with Disabilities


• FEMA - Preparing for a Disaster / People with Special Needs


• Ready America for People with Special Needs


• DisabilityInfo.Gov - Emergency Preparedness