Sarah Goes to College

(A continuation of the story printed in the May 2003 DO-IT News edition, re-printed with permission from The FOP Connection)

Developing supports for a person with a severe disability to live independently is like putting together the pieces of a puzzle. Six months from now, 18-year-old Sarah plans to move into a college dormitory and begin studies to earn a bachelor's degree in Spanish. Already we are working with nearly a dozen puzzle pieces to arrange the supports she will need. In a letter of medical necessity requested by Medicaid to pay for wheelchair repairs, Sarah's pediatrician wrote, "It will require extraordinary will and perseverance on Sarah's part to accomplish this transition in life." This is where Sarah's perseverance has taken her since the last issue of The FOP Connection:

1. Sarah has been awarded a Provost Scholar's Award for $5000 to attend Seattle Pacific University. It is renewable for 4 years. Also, the teacher in the high school Career Center nominated Sarah for a scholarship offered by the local Women's University Club.
2. Sarah's Dad and I set up a trust fund when she was a baby, and our lawyer recommended that we begin to spend it when Sarah turned 18. We are using it to pay for expenses such as Sarah's school supplies, out-of-pocket medical, high school graduation, and college preparation expenses.
3. In December, Sarah signed a Durable Power of Attorney that gives permission to her parents to speak on her behalf and talk to doctors and public agencies who work with her. None of them has refused to talk to me or asked to see the Power of Attorney, but new medical and entitlement providers and college staff address Sarah, and I am learning to keep quiet while Sarah talks to them.
4. Sarah applied for Social Security in December. She receives a Supplemental Security Income (SSI) check for $552 by direct-deposit on the first of each month. She also became eligible for Medicaid health insurance and receives a Medical Identification Card in the mail each month.
5. Sarah and I met with her counselor from the Department of Vocational Rehabilitation to write a blueprint for her career and educational goals, including the costs. Because we claim Sarah as a dependent on our federal tax return, her Dad and I submitted a financial disclosure of our assets, income, and expenses to DVR.
6. DVR contracted with an Assistive Technology Specialist to do an Independent Living Evaluation in the dorm where Sarah will live next year. In late March, Sarah and her parents, the DVR Counselor, the University's Disabled Student Services (DSS) Coordinator and Buildings and Grounds Supervisor, and the AT Specialist gathered at Emerson Dormitory. The Specialist asked Sarah how she goes about her life: "How do you transfer? Use the toilet? Shower? What kind of bed do you sleep in?" Sarah demonstrated the features of her Permobil wheelchair. He asked about her computer accommodations, which include a trackball mouse, dowels for typing, ScreenDoors™ onscreen keyboard and word prediction software, StickyKeys™ to type capital letters, and a Palmpilot™ for taking notes. He offered suggestions that will help her do college-level work:
   • A new computer with the Windows XP™ Operating System.
   • Miniature keyboard, to accommodate her limited range of motion.
   • Kurzweil 3000™ editing software to scan textbook pages and take notes on the computer. SPU uses this program in the DSS office.
   • Scanner and printer.
   • An environmental control unit to access phone, lights, computer, thermostat, TV, and VCR. It can be activated by a switch or voice.
   The group toured a double room with private bath and shower. Sarah would live there without a roommate; her attendant would sleep in the second bed. The adjustable-height desk is tall enough for Sarah's knees to fit underneath. The University will provide a sensor to open Sarah's room door remotely when she drives past the electric eye. The room's only drawback is a step into the shower. We arranged a follow-up visit for Sarah and an aide to practice transferring to the toilet and shower using a DMV-brand power floor lift and a shower chair. The AT Specialist will write a report to recommend accommodations, including remodeling the shower if necessary, and listing the cost. Then the University, DVR and her parents will negotiate what to buy and who will pay for it. The Assistive Technology Specialist will continue to be part of the team until Sarah's accommodations are ready.
7. An adult friend volunteered to be Sarah's attendant for half a day each week, and one of Sarah's high school aides is interested in working for her part-time while she goes to school herself. I will contact the State Department of Social and Health Services to apply for funding for attendant care, specifically the Community Options Program Entry System (COPES) Program. This is Washington State's name for a Medicaid program that pays for personal care and housekeeping so people can live in their homes. We hope DVR will pay for aide-time during the school day, and COPES will fund personal and overnight care. Then we will recruit a staff or hire an agency to find people to be Sarah's personal care attendants.
8. Finally, Sarah will attend Premiere, SPU's freshman orientation session, on May 17th. Sarah will meet future classmates, learn about the campus and the curriculum, and register for fall classes. She asked the DSS office for accommodations to take the math qualifying test. The DSS Coordinator suggested that instead of taking it with other incoming freshmen during Premiere, Sarah can take it privately in the DSS office sometime next summer.

   The pieces in Sarah's support system are beginning to fit together. Many people are working to help her make the transition to college, and a crowd of onlookers are cheering her on.