Facing the Big Question: How will our son fare when we are no longer around? How to find help — and some measure of control

As parents of a young adult with significant disabilities, one question is never far from our minds: What will our son’s life be like when we are gone or simply unable to participate in his care?

A little about our son:

Mark is 22 and has cerebral palsy. He has many abilities as well as disabilities and medical conditions that require one-on-one support. My husband and I — both of us in our 60s — are the primary caregivers. Habilitation aides and nurses also provide support several hours a week.

Mark is creating an interesting life for himself. He’s a student at Community College of Allegheny County with the goal of finishing a certificate in social work foundations and getting a job. He’s active in campus clubs and volunteers at the VA Hospital. He has an active social life and manages his personal care aides very well.

As Mark becomes more independent, paid caregivers will take on more of the day-to-day care that my husband and I provide. But looking ahead to a time when we are not in the picture, we wonder who will be provide the unconditional love and support that ensures that Mark has the life he wants, has the final say all decisions that affect him, and is safe?

With these questions in mind, my husband and I — along with Mark and his older brother Paul — are engaged in future planning.

There are many ways to approach this process (see resources below). We began by choosing an attorney with a specialty in special needs and elder law. The first step was updating our wills and power of attorney documents, which were 15 years old. (Our attorney suggests updating these documents every five years or when there’s a significant life change.) We also asked our attorney for advice about wills and power of attorney documents for our sons.

The next step, much more complex, is to write a detailed letter of intent. This letter will state our wishes, particularly those concerning Mark’s care. The letter of intent is not binding, but is intended to provide guidance.

Most important, we need to talk to our sons about what they want. For Mark, who uses a communication device and requires more time to express his thoughts, a structured process seems the right way to go. Mark participated in “person-centered planning” (see below for definition and resources) when he began the transition part of his IEP at age 14. Now it’s time for another, focused on his preferences as a young adult.

As a graduate student, our older son Paul is still in the process of planning his career, including where his next job will locate him. We will ask him to share his thoughts and feelings about participating in Mark’s care. We are a small family, so we will be looking to include extended family, friends and trusted agencies in the vision for Mark’s quality of life. Creating a non-profit “microboard” (see below for definition and resources) is an option, but we are more likely to do this less formally through the letter of intent.

Doing all this planning is daunting to say the least, but we know it’s necessary. There’s no guarantee that things will turn out as we plan — anything could change at any time —  but going through this process seems to be giving all of us a sense of having some control.

If you’ve been thinking about future planning but need a boost to get started, here are some local resources:

Future Planning Legal Clinic

(Note: The Legal Clinic is completely full at this writing, but read on for how to get on a waiting list)

ACHIEVA Family Trust, through grants provided by Allegheny Bar Foundation and United Way of Southwestern PA, is offering a Future Planning Legal Clinic on Oct. 3, 2017, from 9 a.m. – noon.

Local attorneys who are experienced in special needs planning will be available for 30-minute appointments during which they can help attendees develop a preliminary future planning strategy. Topics of discussion can include wills, guardianships, power of attorney, representative payee, special needs trust and ABLE accounts.

The purpose of the clinic is to provide a no-cost initial consultation after which attendees are free to schedule a follow-up appointment to draft document. To place your name on a waiting list for an appointment, contact Amy Chill at 412-995-5000 x 414, or achill@achieva.info.

Future Planning for Special Needs
ACHIEVA Family Trust and ACHIEVA Advocacy, through a grant from United Way of Southwestern PA, are offering a Fall 2017 speaker series called “Future Planning for Special Needs.” Sessions are held at ACHIEVA headquarters at 711 Bingham St., South Side (15203) or can be accessed via live webinar. To register, contact Patty Yerina, 412-995-5000, pyerina@achieva.info

Friday, September 22
What’s New with the Office of Developmental Programs (ODP)?
Waiver Renewals for the Consolidated and PFDS Waivers, including the new services
9-11 a.m.
Speaker: Kristin Ahrens, Director, Bureau of Policy and Quality Management, ODP

Friday, Oct. 3
Ten Things You Need to Know about Special Education
Program followed by free private sessions where you can consult with a special education attorney.
5-9 p.m.
Speaker: Jeff Rider, Esq., Ruder Law, a Pittsburgh-based firm that represents parents of students with disabilities in school matters throughout Western Pennsylvania. Additional attorneys from Ruder Law will be attending.

Friday, Oct. 13
“I Want to Work and Keep my Benefits”
9-11 am
Panel Discussion:
Bill Frase – Assistant Director of Community Employment, ACHIEVA
Joy Smith, Area Manager, AHEDD (A Benefits Counseling Resource Organization)
OVR  – speaker to be determined
Josie Badger, Campaign Manager, #IWantToWork

Friday, Nov. 10
What’s new with Special Needs Trusts and ABLE Accounts?
9-11 a.m.
Kelly Davis, The Pennsylvania Treasury ABLE Program
Jacqueline Connell, Esq., ACHIEVA Family Trust Attorney

Finding a Special Needs Attorney
The Allegheny County Bar Association has a legal referral service. Call 412-261-5555.

The Disability Rights Network of Pennsylvania can provide information and resources on estate planning, guardianship and power of attorney. Call 412-391-5225.

Person-Centered Planning  
Person-Centered Planning is a team process that helps an individual identify a vision and goals for the future. To find a certified professional to facilitate a plan, visit http://www.learningcommunity.us/network.html

A Microboard is a “small non-profit corporation that functions as a provider agency and is formed with the specific intent to support only one individual with a disability.” (source: Office of Developmental Programs Bulletin 00-07-04)

Future Planning Guide
ACHIEVA offers a “Special Needs Personal Planning Guide.” To get a copy, visit

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