SARAH: Student Advocates Reaching for Awareness & Hope, an advocacy group dedicated to educating around disability rights and specifically, the rights of those who are differently abled to pursue their dreams. 

My name is Sarah Goldman and I am in the Social Work program at the University of Central Florida. I was born with Spastic Quadriplegic Cerebral Palsy, which makes my muscles stiff and limits the use of my arms and legs. It also limits my activities of daily living. I use a power wheelchair for long distances and a walker for shorter ones.  Growing up with a disability, people would always tell me what I couldn’t do. For example, doctors told my parents I would never be able to write or cut with scissors. Against the odds, I learned how to overcome many of these challenges and succeed. My disability has taught me to never give up.  It has also helped me to learn to advocate for myself and to use my experiences to help and inspire others.

When I was a high school senior, I decided to go to college like other students. However, in order for me to live away from home, I need a personal care attendant to help with basic tasks of daily living, such as getting out of bed, taking a shower and getting dressed. Even opening doors and a water bottle can be a challenge for me. Colleges will not provide these accommodations because they are only responsible for academic related assistance inside the classroom, such as a note taker. Medicaid and Social Security benefits for individuals begin at age 18 but, when I was accepted to college, I was only 17 and did not qualify for assistance. As an alternative, we reached out to one college’s nursing school to see if we could have students help me part-time. All seemed well until the day before move-in when I received a last-minute email saying the School of Nursing couldn’t allow their students to help me due to liability reasons. I was already nervous moving away from my parents and this just made it worse! Since we had the truck packed, we decided to continue with plans to move me in and sort through this in person. We sat in meetings all day after I moved in begging for help so that I could stay. Unfortunately, and as hard as we tried, the help I needed to live on campus failed to come through. I was so tired of hearing the words, "no, we can't help you," or "there is just nothing we do for you." Without assistance there was no way I could stay, so I had no choice but to pack up and move home. In the same weekend I moved in, I moved out. Instead of saying goodbye to my parents, I had to say goodbye to my roommates. It was a confusing time and I felt very lost. I had a hard time understanding why there was no assistance for someone who clearly needed it. I simply wanted to have the same opportunities as everyone else.

Funny thing about life… you continue to believe and everything works out in the end. After I turned 18, I was accepted for Medicaid and Social Security Disability within two months of applying. Around that same time, UCF, which had been my first college choice, accepted my application for admissions.  Everything seemed to be falling into place for me but there would still be more obstacles to overcome. Medicaid initially denied my request for needed personal care hours. Their reasoning was that going away to college was “a convenience, and not a necessity." They suggested my parents should drive several hours each day after work and on weekends to take care of me. After a Medicaid fair-hearing and working with multiple disability advocates and attorneys, we won our case granting my needed support hours.

When I turned 21 there was yet another challenge to overcome. Medicaid’s policy states, “private duty nursing, personal care and therapy services are limited to children 20 years of age or younger who are medically complex.” There was no formal warning from Medicaid but luckily I had friends who had been in a similar situation and helped make me aware. Their experiences helped me to take the appropriate action prior to my 21st birthday and fortunately; I was able to receive services from other agencies to continue my care until I graduate. 

As a future Social Worker, I want to help to make sure persons with disabilities have equal opportunities so that they may achieve their goals and reach their dreams. A career in Social Work will allow me to be an advocate, supporter, counselor and encourager to people who desperately need guidance and hope. The Social Work profession will allow me to share my experiences and help advocate for others.  It might also help me to influence policies that unfairly limit the rights of the disabled.

Some of my classmates in the Social Work program have joined with me to create the SARAH project: Student Advocates Reaching for Awareness & Hope, an advocacy group dedicated to educating around disability rights and specifically, the rights of those who are differently abled to pursue their dreams. 

We feel that assistance for disabled students should not stop with high school graduation. Policies can and should be extended to support post-secondary education. Everyone is entitled to equal education, opportunity and access. If students with disabilities are forced to live only in their homes, they will never have a chance to gain independence, pursue their dreams and become productive members of society. Disabled people have many of the same dreams and passions as any able-bodied person. There is much that can be done to support disabled students. 

We want Florida Legislators to increase support for disabled students entering universities so they can pursue their dreams of higher education and become self-supporting, independent adults.

Here are some ways this petition can help!

1) Extending K-12 services to the college level. K-12 students receive many services that are unavailable to college aged students. These include on-campus daytime Personal Care Assistants, required nursing care and transportation to/from school.

2) Providing programs and plans during high school years for families of students with disabilities who are planning on entering post-secondary education. Provide information including:  agency referrals, specific plans for accommodations, and a timetable of who will do what by when. 

3) Ensuring that students wishing to continue their education but not having turned 18 at the time of graduation be permitted early entry into Social Security (SSI) and Medicaid programs. In addition, once accepted into these programs, they should apply to the student until college graduation (not dependent on age).

For more information on the SARAH project, see the Facebook page: https://www.facebook.com/sarahforawareness