Impact of 1001 beyond a family

FV Indiana members are sharing what the impact of proposed changes to Medicaid Waivers will be in their lives. We share their stories, and encourage each of you to continue contacting your Legislators.

For the last 15 years, I have worked with children who have special needs. I began as an instructional assistant in a classroom at a special needs school that closed at the end of last school year, due to budget cuts. The children in that school were all scattered to their "home" schools. I then secured a position as an instructional assistant at a school within my district.

Shortly into the present school year, I had an opportunity come my way that I couldn't pass up. The parents of Hailey, one of my former students, learned that they had "nursing care" hours available to them due to Hailey's specific medical needs. They use these nursing care hours by employing me as a full-time caregiver/lifeskills teacher during the time they are both at work. I welcomed the chance to work one-on-one with Hailey, and am so happy in this position. Hailey has become like a member of my own family, and I could not imagine a better job than this.

Hailey has severe cognitive disabilities due to a very rare genetic chromosome-deletion syndrome. There have only been a handful of people diagnosed in the entire world with what she has. This condition also resulted in her facing very dangerous physical limitations--she has very low muscle tone. This lack of muscle tone results in gastrointestinal disorders (for which she has had major surgery and requires daily assistance in eliminating waste). She is also very susceptible to pneumonia and other infections due to her low resistance and inability to utilize her muscles properly. As well as being non-verbal, Hailey has major sensory issues also, requiring the utmost in painstaking supervision at at all times. All times means 24 hours a day, 7 days a week.

Hailey and I participate in a variety of community-based activities each week. Together, we go to the library, museums, restaurants, parks, pottery classes--even the grocery store. Each trip is a learning experience for her. She is thriving both intellectually and socially--thanks greatly to our being able to utilize the waiver services she has.

I have gotten to know her family very well. They are amazing people--who did not ask to have these worries forced upon them. They have made the best of a deplorable situation. No one asks to have a child born to them with special needs. I have seen the struggles, both financial and mental, that her parents face every single day. By having these waiver services, everyone in Hailey's life benefits--especially Hailey. Her mother is able to work full-time, and I am employed in a position which I love as well. Her parents have peace of mind knowing she is well-taken care of, learning, and thriving. Hailey is an inspiration to me, and I cannot think of my life without her on a day-to-day basis.

Reducing the amount of waiver benefits would be an unbelievable hardship on a family like Hailey's. Exceeding the lifetime cap on private insurance can happen in months. These families are in their situations for a LIFETIME--their child's lifetime. Even someone with a huge income could become totally bankrupt in the blink of an eye. The majority of us do not make that kind of money, and reducing benefits for these children would bring disastrous results not only for the parents, but the caregivers, therapists, and various programs in which these families participate. This possibility has far-reaching effects--everything from divorce and bankruptcy, to unemployment for those involved in the day-to-day aspects of these children's lives. Most importantly, it would be disastrous for the child whose everyday life is negatively affected by these cuts.

Think about the term "special needs." It does not solely refer to a child's physical or mental condition. It is a NEED that is deemed SPECIAL -- of utmost importance.

(1) Financial stability/peace of mind of a child's family is a SPECIAL NEED.

(2) Proper healthcare for a child is a SPECIAL NEED.

(3) Having qualified caregivers is a SPECIAL NEED.

(4) Proper equipment for a child is a SPECIAL NEED.

(5) Adapting one's home to meet physical requirements is a SPECIAL NEED.

(6) The proper educational environment for each child is a SPECIAL NEED.

(7) Therapy is a SPECIAL NEED.

(8) The best quality of life we can give them is the MOST SPECIAL NEED.

There are countless other "special needs." We, as parents, caregivers, and therapists, choose to speak for the children we have been blessed with. Our legislators must do the job they have been entrusted with as well. They claim that they speak for "us" -- the voters. Right now, it is most important that they speak for those who have NO VOICE--our children.

Laurie Abel
Noblesville, IN