A Success Story!

Here's what working together can achieve  . . .  !

Upon a referral from a north suburban special education organization I was introduced to an amazing family.  The mother of an 18 year old high school graduate was calling for assistance.  She had recently learned that their family health insurance carrier was not going to provide 24/7 nursing care for her daughter as of September 1st.  This was particularly devastating as her daughter was accepted and registered for classes at Northern Illinois University, beginning August 19th.

The issues in this case were many, to say the least.

Initially, we talked about what to do about the decision of the new insurance company, but we quickly ascertained that a more proactive approach was required in this situation.  It was clear that this young woman would benefit from the DRS - Home Services Program and Medicaid.  The first step was to have her be found eligible for SSI, though.  Clearly, she met the SSA disability standard, but she was over-resourced for Medicaid and SSI.  The young woman had a clear vocational goal so after some discussion she, and her mother, were very open to developing a PASS Plan.  With the tremendous assistance of Karl Gillespie, our PASS Specialist, and the careful record keeping and writing ability of the mother - this task was quickly accomplished.

With the completed PASS Plan in hand, the young woman, her mother and I attended the application appointment for SSI at the Prospect Heights SSA office.  As her application was completed, the PASS plan was also submitted.  When I followed up with Mr. Gillespie I learned that he, in fact, had not received the PASS Plan, as required.  He then called the Claims Rep who took the app at the Prospect Hts. office to insure that the Plan was forwarded to him in the required timeframe.  Needless to say, this was the first PASS Plan that the CR had accepted with an SSI app!

As a result of notifying Mr. Gillespie of the PASS Plan concept, before it was written, he was prepared to work very quickly with the family to approve the plan.  He approved it in less than 10 days!

Previous to the SSI app, the mother had applied for Medicaid for her daughter.  No decision had been made during this time (at least a month and one half).  Through this application process she did not realize that the money the daughter had received through the years from her grandparents would be counted as a resource and make her ineligible.  I encouraged her to notify the Supervisor at her local DHS office that a SSA app had been filed along with a PASS Plan, which she did.  Since time was of the essence, less than 4 weeks before the young woman was to leave for college, I contacted the Client Assessment Unit and requested that the determination on this case be expedited.  Thankfully, a decision was made in less than one day.  The determination was then relayed to the local office.  Once the supervisor learned of the medical determination and of the PASS submission, he told the mother to come into the office and pick up a Medicaid card for July!  This was within a 4 day period!  She has since received the cards a medical card each month.

While this process was moving along, the mother followed up on several other recommendations.  She had been working with the DRS Home Services Program in DeKalb who had determined eligibility for 5 hours of home services at school, nowhere near the 24 / 7 that the family felt was needed.   Since the young woman did not have an open DRS VR case, an appointment was scheduled to do so.  The mother also contacted the Division of Specialized Care for Children to apply for the Medicaid Waiver program administered by them.

Through the mother's perseverance, a VR case was opened and an IPE was written to support the vocational goal and the milestones of college education.  Of the $6,600 tuition, room and board costs, the student is now paying $1,400 from her PASS Plan, with VR paying the balance! On August 31st they learned that DSCC will cover the remaining hours of needed nursing care in the day.  To make this an even happier ending, they are able to stay with the nursing agency that was contracted with before school started, so there won't need to be a transition period with new nurses!  Coverage will also be available to the young woman when she is at home during breaks.

As you can see, all of this is due to a very strong mother who advocated, persisted and dug for the results.  Once she was equipped with the knowledge of what waivers and services were available, she made it all happen.  You may be wondering how things are going for this student who has a tracheotomy and is ventilator dependent (for most of the day).  Well, the first three days required very tough love on the part of the mother.  The daughter was calling home - hourly - asking to be picked up and brought home since she had made a 'a bad decision.'  Needless to say, she stuck it out and once classes began she's been loving meeting new people - both disabled and non-disabled, as well as her classes! Also, she's learning how to best advocate for herself with and to train her nurses 

Needless to say, I spoke with a very jubilant mother as she learned that all of these pieces came together at noon on the last day before her insurance carrier changed!  She gave me permission to spread this story widely.  She has offered to speak with anyone about all that she's learned through these experiences.  I particularly appreciate this offer since she, herself, is a middle school teacher and is starting graduate school, in her spare time!

She recalled that for all of the special education classes, IEP's, etc. that they have had over the years and for all of the conversations she's had with other parents, she had never heard that one could 'use' their resources for school, rather than having to spend them down in order to be eligible for more services.  She wants to get this word out!

With her permission, we can all get this word out, though.  If we continue our missions to educate transition-aged youth, their families, educators and VR counselors, then, a direct result will be to have more students encouraged to develop their independence, more federal dollars should come into the state and, eventually, less people will be dependent on the public benefit system due to their education and training preparing them for the work world!  This is an excellent example of how bringing systems together to blend resources can benefit everyone!

Of course, since DSCC only serves individuals up to the age of 21, we are already on the search to make sure that the nursing care she needs to remain independent of her family is in place, well before her 21st birthday and not in the eleventh hour!

Besides crediting the mother in this case, I would like to thank Michelle Lawrence and Laura Gallagher Watkin of the DHS - DRS Benefits Planning, Assistance and Outreach Project for their advocacy at the outset of this case; Karl Gillespie, PASS Cadre; the Mt. Prospect SSA office staff; the local DHS office supervisor; CAU;  DSCC;  DRS - VR and DRS - HSP.  With the efforts of all of these individuals and entities a dream is becoming reality.

If anyone has any further questions about this case, I would be happy to discuss the steps that were taken to make this situation a positive one!

Marsie Frawley
Project Coordinator, Work Incentives Support Center
Health & Disability Advocates
312 223-9600
800-427-0766 (tdd)


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