Sarah Goes To College

Marylin Hair, Sarah's Mom

(Re-printed with permission from The FOP Connection)

Sarah's sister, Mollie, was given a Tantrix puzzle for Christmas. It consists of 10 8-sided tiles, numbered 1 through 10. Each number is red, yellow or blue. When you turn a tile over, it has 3 lines, a red, a yellow, and a blue line. Some of the lines are straight, and some are curved. The object of the game is to arrange the tiles to make the lines form a loop or circle.

There are ten different loops to solve. You start with tiles 1, 2 and 3. The number on tile 3 is yellow, so make a yellow loop. Easy, huh? Now break up the loop, add tile 4, and make a red loop. The more tiles you use, the harder it is to make a loop. When you use all 10 of the tiles, there is a solution for each color.

Picture of DO-IT Scholar Sarah
DO-IT Scholar Sarah

For an adult with a disability, arranging the supports needed to live independently is like solving a Tantrix puzzle. The goal is to make all the pieces of your support network form a loop or circle that provides everything you need. The circle is not one-size-fits-all. One person might need three pieces to form a complete circle of support; someone else has greater needs and requires more pieces to form a complete circle. If it sounds complicated, it is.

In the November issue of The FOP Connection newsletter, we reported that Sarah has participated in college-preparation activities in high school, taken the Scholastic Aptitude Test, and submitted her application to college. Now, our family has begun working with some of the pieces that will form the circle of support for Sarah to attend college and live away from home:

  1. In December, Sarah announced on FOPONLINE that she has been accepted to attend her first-choice college, Seattle Pacific University in Seattle, Washington. Her Dad, Richard Steele, is a professor of theology at Seattle Pacific. SPU has a new dormitory with some accessible ADA rooms. It is 11 miles from home. Now that Sarah has been accepted, she can begin talking to the Disabled Student Services (DSS) Office about accommodations. Every college in the U.S. that receives federal money has a DSS office. Sarah applied under the early action timeline so she would have plenty of time to arrange her accommodations.
  2. We consulted a lawyer. Our wills were written when the children were small and we lived in a different state. When Sarah turned 18, she outgrew the guardianship arrangements for minor children in our wills. Our lawyer helped Rick and I draw up new wills which include a special needs trust to provide for Sarah if we both die.

    Sarah also signed a durable power of attorney which empowers her Dad or me to be her "attorney-in-fact." This lets us continue to be Sarah's advocates by talking to her doctors and having access to her medical records. We can also sign legal documents for her. Under the power of attorney, Sarah can speak and sign documents for herself and her parents can't overrule her decisions. She can revoke the power of attorney any time, or fire us as her attorneys-in-fact. Sarah and her Dad and I also signed a rent agreement which says she will pay $400 a month to live in our home. This will help her qualify for the maximum amount of monthly SSI payments.

    Our lawyer gave us the name of another lawyer who specializes in disability law. In one appointment with him, I gathered a lot of valuable information about services available to people with physical disabilities in our state. He reviewed the draft of our wills and special needs trust and suggested a few revisions which our lawyer included in our wills.

  3. Sarah applied to the Social Security Administration for SSI, or Supplemental Security Income. This monthly stipend is available to adults age 18 and above who are disabled and have less than $2000 in assets. SSI is also available to children when their parents have limited assets. We completed the 10-page application and Sarah signed releases to let Social Security contact her doctors and see medical records that document her disability. We opened a checking account in Sarah's name and arranged for direct deposit of her SSI check. Both parents' names are on the account. If her application is approved, she will begin receiving a monthly check on February 1st, one calendar month after she turned 18. SSI pays $552 each month for rent, food, clothing and incidentals.

    When a person receives SSI, they also qualify for Medicaid health insurance. Since Sarah is covered under our family's health insurance policy, Medicaid will pay the co-payment for her doctors appointments and prescriptions, and for medical care and equipment that's covered by Medicaid but not by our family health insurance policy. When she is too old to be covered as a child under our family policy, Medicaid will be her primary insurance.

  4. Another piece in Sarah's circle of support is college financial aid. On January 1st, along with every other parent of a high-school senior who plans to go to college, we filed a FAFSA, or Free Application for Federal Student Aid. The FAFSA is an abbreviated tax return; parents and students report information about their finances for the year just ended. One month after you file the FAFSA, you get an SAR, or Student Aid Report, which will give your EFC, or Expected Family Contribution. Colleges use this standardized information to prepare a financial aid package for each student. Colleges offer a combination of grants, scholarships, loans and work-study dollars to pay the difference between your EFC and the cost of attending their college.

    Sarah also assembled a Senior Portfolio for the Career Center at her school. Seniors who submit a portfolio of their interests, accomplishments, and plans for higher education are considered for scholarships that are awarded to graduating Seniors at Lake Washington High School.

  5. In the fall of her Senior year, Sarah applied to the Department of Vocational Rehabilitation for help with postsecondary career training and employment. DVR is a federal program that is administered by each state. Sarah qualified for services right away because she has needs in several areas, including mobility and personal care. She was assigned a DVR counselor who will work with her and the college. Sarah can be a client of the DVR until she finds employment in her chosen field. DVR requires parents to disclose financial information and contribute towards the things DVR provides, if they have resources, as long as they claim their child as a dependent on their federal tax return. The Department of Vocational Rehabilitation pays for items such as tuition, books, computers, classroom aides (but not personal care attendants), transportation, wheelchairs, and hearing aids.
  6. Sarah, her Dad and I went to campus to meet with the Program Coordinator for Disabled Student Services at Seattle Pacific University. The Program Coordinator asked about Sarah's living needs and what accommodations and assistance she will need to live in the dorm. Sarah was also asked what educational accommodations she has used in public school, and the Program Coordinator told us the college will provide note-takers, textbooks on CD where available, accommodations for taking tests, and accessible technology such as screen reader, speech recognition, onscreen keyboard and word prediction. Students must provide their own personal care attendants. A double room with a private bathroom in the new dormitory would accommodate Sarah if the bathtub is remodeled into a roll-in shower. Sarah signed a release to give the DSS Program Coordinator permission to talk to her parents, college professors and other staff, and her DVR counselor. Sarah was asked to bring a letter from a doctor to document her disability and describe how it affects her in an academic setting.
  7. Sarah's last IEP meeting was held at high school. States use their own terms for special education services; in Washington State, students in special education have an Individual Educational Plan, or IEP. Beginning when the student is age 14, all schools must address their "transition" to life after public school. Sarah's DVR counselor attended her IEP meeting, along with her Special Education teacher, Occupational Therapist, the school nurse, an aide, 3 classroom teachers, school psychologist, parents, and, of course, Sarah. The special ed teacher and related services staff enumerated and recorded all the accommodations Sarah receives. The teachers reported on Sarah's progress in their classes. The DVR counselor was taken to see the school's accessible bathroom and Barrier-Free power lift which Sarah uses to transfer. The group discussed computer technology that might be useful for college work, an emergency plan in case of wheelchair breakdown, providing a cell phone and a way for Sarah to handle it without assistance, and attendant care. Sarah's DVR counselor described the services her agency provides, and said that it will be difficult to find funding for enough hours of attendant care to complete her circle of care.

The next step in helping Sarah prepare for college is to order an Independent Living Evaluation. An agency will be hired to document which activities of daily living Sarah can do for herself and which she can do with assistance. Right now DVR and SPU each think the other should pay for this evaluation. We hope their disagreement won't delay Sarah's preparation for college. The subsequent step will be to find funding for attendant care. The lawyer who specializes in disability law gave us the name of someone to call at DSHS, the state Department of Social and Health Services. There is also some attendant care available to people who qualify for Medicaid. We know where to start when it's time to pick up that piece of the puzzle.

The more tiles there are in the Tantrix puzzle, the harder it is to connect them in a circle. Sarah's circle of support has eight pieces so far. We know it will be complicated for her to go to college. We're hoping, praying, and working toward solving the puzzle in time for the start of classes next September.