Build An Emergency Special Needs Binder

Holland may be beautiful, but it's very, very complicated. If (God forbid!) anything were to happen to you, would your spouse, mother, friend, brother or other trusted person know what to do to keep your special needs son or daughter's life running smoothly? I know mine wouldn't, so today I'm building an emergency special needs binder. 

I have my big, fat, 2-inch binder from Costco, and my big, fat pile of every document I've filed, every bill I've paid, and every report I've received on my son's behalf during the past 12 months. I also have a nice pile of crispy new sheet protectors and dividers, and my 3-hole punch and copy machine on standby. I am ready to go!

I start with an Index, where I list each document and divider tab number. Tab1, Document 1, is a copy of my Will and Trust, with a note on where to find the original. (Note to self: I really need to update this.)

Tab 2 is a copy of a recent SSI Benefit Determination Letter. My son is an adult, living in his own apartment, but I am the "representative payee" for his SSI payments. My index notes the SSI contact number, and that their office needs to be notified of any change in my son's circumstances (such as the untimely demise of his representative payee).

Tab 3 is a letter on where to find medical and tax files, password lists, apartment lease, passports and other Critical Documents. Tab 4 is a Bill Paying Guide, where I identify my son's bank accounts (including representative payee account), debit/credit cards and related passwords, and list all monthly recurring bills and charges, including any of my son's bills that are paid by automatic charges to my credit cards.

Tab 5 is a copy of the most recent IPP, along with a note explaining what a Regional Center is, and identifying the case manager. Tab 6 is a copy of the most recent DOR (Dept of Rehabilitation) correspondence, with name of case manager.

Tabs 7 and 8 are for copies of annual Section 8 Notices: Notice of Annual Inspection, and Notice of Change In Rent Subsidy, and an explanation of what they require. Tab 9 is for the Section 8 Annual Review -- a copy of the notice and documents filed, as well as an explanation of the process. Section 8 is especially tricky, because they will only send notices to my son's apartment, with no copies to me; and because they have no mercy for missed appointments. So my family needs to BOLO for these notices. Fortunately, my son's Section 8 advisor is very nice and helpful, so I included his name and contact information.

Tab 10 is a copy of the most recent annual Representative Payee Report, and instructions on how and when to file. Tab 11 is a copy of the annual SSI Eligibility Redetermination filing, and instructions on how to complete the filing package.

Tab 12 would be for a copy of most recent 1040/540, if my son actually had any income to report. I'm keeping the tab open, though, because he is starting a new employment search program, so maybe he'll get lucky!

Tab 13 is for a letter detailing Medical Information, including doctors' and dentists' names and phone numbers, dates of most recent medical visits, insurance information and record numbers; a list of any recurring medications and how to order refills (including passwords for online ordering); and any special information (i.e., fear of dentist).

Additional tabs hold copies of dial-a-ride and bus ID cards, including Notes on how and when to replenish the accounts. Copies of special discount program renewal forms are also included.


At the back of the binder, I include some helpful guides, such as the SSA's Guide For Represenative Payees, Disability Rights California's Public Benefits For People With Disabilities, and a brief description of the regional center system (with perhaps a link to a more comprehensive book, Rights Under the Lanterman Act. Parents of school-age children may want to include information about special education, such as Special Education Rights and Responsibilities.

Now that I have completed my binder, I will have to tell my family about the book and where it is located. I won't be showing the book to them, though. I don't want to scare them!