Thursday, November 9, 2017

Carving out time to listen our son's vision for his life


We spend hours together every day and, yet, how much do we know about how our 22-year-old son thinks about his life and what he wants for his future? 

After more than two decades of parenting, have the lines blurred between what we want for our son and what he wants for himself? Are we ready to whole-heartedly support his vision?

These are the questions I have been asking myself -- and the reason I asked the PA Family Network to offer a local workshop on LifeCourse tools. 

The PA Family Network is the go-to for information about this person-centered process. Melissa Morgan, the Southwest Coordinator for PA Family Network, will present the workshop on Wed., Nov. 15, 5:30 to 7:30 pm, at East Liberty Carnegie Library, 130 N. Whitfield St. (15206).

Here's the info:


















Tuesday, September 12, 2017

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 c
linic 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 www.learningcommunity.us/network.html



Microboards
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 
https://www.achieva.info/planning-guide





Have an experience or resource to share? Comment below.


Wednesday, October 26, 2016

The “Bus Stopped Coming” (literally and figuratively), and Now I’m Spending Way Too Much Time Behind the Wheel

Call me naïve, but I never realized how much driving I'd be doing after my son Mark graduated from the school district five months ago. I have essentially taken over as bus driver.

He received terrific travel training at the City Connections transition program. He's taken dozens of rides on Port Authority buses and ACCESS. But since he graduated, he hasn’t taken the bus or ACCESS even once.

Why? Because he needs one-on-one support during the commute. He has a support person who meets him at Community College of Allegheny County for classes, but finding an aide to assist him to and from school on a bus or on ACCESS has eluded us. The driving time to CCAC plus the waiting time involved adds up to at least 15 hours of my time per week.

Mark’s supports coordinator told us that we could ask for mileage reimbursement as part of his Independent Support Plan, but I’d prefer getting the time back rather than the reimbursement.

Has anyone figured this out? 

I reached out to other families to see if they are facing post-transition transportation issues and what kinds of solutions they've figured out. Or not.

-Rhonda and her daughter Molly were smart to look for a post-transition aide before Molly graduated from school district services this year. Through networking and the help of the City Connections transition program, they found and trained the right person for the job -- a retired person who drives Molly (in the family's wheelchair van) from their northern suburb to Oakland four days a week for volunteer jobs. ACCESS and Port Authority were not viable options for a travel between home and Oakland because of logistics, Rhonda said.

-Mary Ann and her daughter Nicole have solved the transportation issue by hiring experienced aides who drive the family car to take Nicole to her volunteer job and other activities. Nicole and her aide also use the suburban "park and ride" feature of the "T" for recreation in the city. "The aides do a lot of driving," she said, adding that the family sets a high bar for safe driving practices. 

-Lynn and her daughter Abby, who live in Butler County, have used a combination of transportation resources since Abby graduated from school district services in 2011. Two of the programs Abby has participated in were in neighboring counties (one in Allegheny and one in Beaver) so she took a taxi to each because the Butler County paratransit system cannot cross county lines. Lynn said the taxi was costly – about $200 per round trip. Although the cost was covered by waiver, a more cost-effective solution would be to allow paratransit to cross county lines, Lynn said, adding that a conversation has begun in Butler County to try to address this issue. Abby just landed a job in Butler County and she will use Butler paratransit to get there. However, because the paratransit ends at 3 pm, another form of transportation will be needed for return trips.

-Barb and her son William, who graduated in 2011, have found a reliable method for William to get to his day program: a standing order with ACCESS, which they have found to be very reliable. William also travels with an aide on Uber for appointments and other single trips. The family is looking into using ACCESS for those trips in the future.

- Candy's son Colton attends a city high school and is already dealing with complicated transportation issues involving his three jobs in the East End. Candy said Colton is not eligible for ACCESS because he's been fairly successful on public buses. However, he's not completely ready to handle problems that might come up when using the bus. The family does a "whole lot of juggling" to ensure rides, and needs to find a better system going forward. Candy would like to find a consistent Uber driver. 

- Robie's young adult daughter and Judy's young adult son use Sierra Transportation (an alternative to Port Authority ACCESS) for their standing-order rides to day programs.


Transition-to-Adulthood Take-aways:

 -Figure out the post-transition realities of transportation before graduation.

-If using a one-on-one aide, find someone who can drive your vehicle in addition to providing support on site, rather than splitting the job into two. 

-Network hard to find the right person for a job that requires driving a family vehicle. 


-Problem solving is needed to address “crossing county lines” paratransit issues.

-Port Authority ACCESS is not the only paratransit system covered by waiver in Allegheny County. Sierra Transportation is another. 


For Further Exploration:


Transportation options like Uber and Lyft are emerging as an alternative to ACCESS for people who can use standard vehicles. For people who have ID/DD waivers, what about a "card" with a set amount of funds for this kind of service (similar to an Medicaid EBT card for food assistance)? A potential niche may exist for Uber or Lyft drivers who specialize in serving passengers with disabilities. 

Do taxi companies who transport people with disability across county lines charge exorbitant prices for the service because it's covered by waiver funds?

Are there other waiver-covered paratransit services besides ACCESS and Sierra Transportation?



Have an experience or idea to share? Comment below.