Building a Resource Manual for Future Caregivers

A girl hugs a boy from behind, pulling his shirt.

Resource Manual

Any parent of a child with special needs understands the amount of effort that can go into providing care for their loved one. Along with the roles that come with being the parent in any family, additional responsibilities such as the management of daily schedules, coordination of medical care, therapy and supports can prove to be a lot. Over time it can become less taxing as routines are developed, parents develop best practices (through trial and error) and begin to understand how to most efficiently provide the loving support their child needs.

One responsibility most parents tend to overlook is working to provide future guardians and caregivers the education necessary to do the same. While there is no all-inclusive list that could possibly provide future caregivers all of the information parents obtain over time, the guide below can serve as an effective start. Our recommendation is for every parent to create a binder consolidating various files, resources and guides to both prepare future caregivers, as well as serve as an “instruction manual” when transitioning care. The items below should be the foundation of the binder.

Full Financial Plan

The financial plan, preferably prepared with the help of a professional specializing in the support of families with special needs, should be a comprehensive plan addressing a range of issues. This plan of course should consider the entire family’s needs, not just those with special needs. Issues to address may include but should not be limited to a full insurance needs analysis (to address medical coverage, life insurance, disability insurance and long term care), an education funding plan, a family budget and establishment of emergency funds, an asset allocation review, comprehensive retirement planning and most importantly an estate plan considering the unique needs of an individual with special needs.

Legal Documents

Copies of all will and trust documents, most importantly a copy of the special needs trust, are vital components. Be sure to keep the binder current with any amendments or changes to the documents over time.

Guardianship Documents

Once a child turns age 18, and if appropriate guardianship is addressed in some way, a copy of all filings and court correspondence should be enclosed. If guardianship or limited guardianship is obtained, keep a copy of both the petition and granting of guardianship. If a power of attorney is instead suitable, maintain a copy of the signed document.

IEP Records

Copies of the most recent IEP plan can serve as a great tool to educate caregivers on the type of support currently being provided to the child. If the child has graduated from the school system, a copy can still be maintained in the binder as a resource when applying for government benefits, grants and resources. The very first IEP can also be a helpful resource in the binder.

Continuity of Care Guide

A version of a Letter of Intent, this document should be the most thorough resource in the binder. It can start with the family routine, along with daily “do and do not’s”. It should include emergency contacts, medical records and physician and therapist information. It may even contain things like family traditions and celebrations, a record of family and a listing of friends. This document can range from a few pages up to dozens of pages and will take time to develop, but may be the most important of the entire binder.

Beneficiary Audit

A full accounting of family assets, including the owner of the asset, custodian/investment company information and all named beneficiaries. This document serves an important role in confirming that a families estate is coordinated with the special needs trust, and can help with the transitioning of funds that may be vital in providing immediate care.

Child Documents

Parents can likely pull things such as social security cards, birth certificates, medical insurance cards and other necessary documents with little trouble. But could someone else find these documents if needed? Either maintain copies of these documents or direction as to where they can be found.

Social Security Records

Once a child turns age 18, assuming they are eligible for benefits such as social security and medicaid, paperwork will accumulate quickly. Documents including the original application for all services, correspondence between the social security administration and family, notification of approval or decline, eligibility or benefit changes and receipts should all be accounted for.

This article was modeled from The Special Needs Planning Centers Blue Binder, a resource guide developed for parents and used to prepare future guardians and caregivers of their special needs child. For more information on the Blue Binder or The Special Needs Planning Center, go to snpcenter.com.

Photo courtesy Jonnysek, Photoxpress.com

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This post originally appeared on our January/February 2020 Magazine

Building a Resource Manual for Future Caregivers

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