PA Family Network: Peer Support for the Waiver System

Over a lifetime in Pennsylvania's disability service system, a family meets many professionals. Supports coordinators take new jobs. Providers change hands. Program rules get rewritten, sometimes with a bulletin nobody sent you. The one part of the system that never turns over, however, is your family.

That is the idea behind the PA Family Network: a free, statewide program where the person sitting across from you has been through it too.

What the PA Family Network Actually Is

The PA Family Network is a statewide peer support program for families of people with intellectual disabilities, developmental disabilities, and autism. Its Family Advisors are located across Pennsylvania, offering mentoring as well as workshops to help you find your way through the service system.

Who Runs It

The Network was created under the leadership of Vision for Equality, a Pennsylvania advocacy organization, and is supported by the Office of Developmental Programs (ODP) as part of Pennsylvania's Community of Practice: Supporting Families Throughout the Lifespan. Pennsylvania joined this national initiative in 2016.

Who Can Use It and What It Costs

The PA Family Network is free and available throughout all of Pennsylvania. Families reach out at every stage: while a diagnosis is still being sorted out, while waiting for a waiver slot, and years into an established set of services. Mentoring and some workshops are also offered in Spanish.

Every Family Advisor either has a disability or is a family member of someone who does. That is the whole difference between this and a helpline. Nobody is reading you a policy from a binder; they are telling you what they did when they were where you are.

What the Network Offers Families

One-On-One and Small-Group Mentoring

You can schedule a session with a Family Advisor in your region (on your own or with a few other families) at a time that works for you. Sessions cover whatever you bring: finding information, building a vision for your family member's life, starting a LifeCourse Portfolio, or figuring out how ODP's system is supposed to work.

The Workshop Series

Several workshop series run statewide, developed for families by families:

• Creating a Vision for a Good Life
• Transition to Life After High School
• STAR Power (limited availability)
• Living Safely in the Community
• L.E.A.D. the Way to Healthy Relationships & Sexuality
• Peace of Mind Planning: Long-Term Planning for a Good Life

Workshops can be virtual or in person, and a support group, family group, or school district can book one directly. Additional sessions rotate through the Network's events calendar throughout the year, including waiver-focused workshops, sibling groups, and lifespan transition sessions.

InVEST: Advisors Focused on Employment

The Network is part of the Integrated Vocational Engagement Support Team (InVEST), a partnership with Pennsylvania's Office of Vocational Rehabilitation. These Family Advisors are trained specifically around competitive integrated employment, and they work alongside families and employers. That matters more in 2026 than it did 2 years ago, for reasons covered further down.

The LifeCourse Framework: Planning for a Life, Not a Service Package

Most of what Family Advisors teach comes from Charting the LifeCourse, a framework developed at the University of Missouri-Kansas City and used throughout Pennsylvania's disability system. The tools here are free worksheets, though their true value is in what they force you to think about.

The Integrated Support Star

The Star maps five sources of support in a person's life:

• Personal strengths and assets
• Relationships
• Technology
• Community resources
• Paid services

Most families arrive at their first planning meeting thinking about the last one on this list. The Star is a reminder that it is only one point out of five, and usually not the one carrying the most weight.

You also list who is already in the person's life, then look at the shape of it. The gaps tend to be obvious once they are on paper. Relationships are also the only support on the Star that outlasts every provider, every funding stream, and every coordinator.

Bringing a LifeCourse Portfolio to an ISP Meeting

Here is the practical payoff! The Individual Support Plan (ISP) meeting is where your family member's services get written down and funded. A family that walks in with a portfolio already built is answering a different question than a family that walks in cold.

One option is deciding which of the available services fit the life they have described. The other is being handed a menu and asked to choose - same meeting, same people around the table, completely different center of gravity.

Making Sense of the 2026 Waiver Changes

Pennsylvania amended its Medicaid waivers, effective January 1, 2026. A few key changes matter most at the kitchen table.

Assistive Technology's Lifetime Cap is Gone: Assistive technology (AT) is no longer capped over a person's lifetime. Under the Consolidated Waiver, it moves to a $3,000 per fiscal year limit with a path to request a variance. Under the Community Living Waiver and the Person/Family Directed Support (P/FDS) Waiver, AT is folded into the annual service limit. The separate $5,000 lifetime limit on generators stays as it is.

For a family that used up a lifetime cap on a communication device in 2014, this is the change to ask about first.

A Clearer Path Out of Prevocational Settings: Participants in prevocational services must now have competitive integrated employment outcomes and a timeline written into the service plan. Prevocational providers must also be approved Office of Vocational Rehabilitation vendors. The intent is that prevocational becomes a stage rather than a destination.

Benefits Counseling Includes Representative Payees: Providers delivering benefits counseling must ask whether the participant wants their representative payee included, and document the answer. Read that as a choice you are entitled to make, in either direction, rather than a form to sign.

Health and Welfare Needs Above the Cost Limit: P/FDS and Community Living participants whose emergency health/safety needs exceed their waiver's cost limit now have a documented pathway to transfer to the Community Living or Consolidated Waiver. Knowing the pathway exists is what lets a family ask for it during a crisis.

A state bulletin tells you the lifetime cap was replaced with an annual limit. A Family Advisor who fought for a device three years ago tells you what to put in the request, which denial reason to expect, and how long it took. Both are accurate, but only one of them is usable on a Tuesday night.

Peer Support and Supports Coordination Are Two Different Jobs

Families ask us this constantly, so let's be plain about it: a Family Advisor and a supports coordinator are not competing for the same seat.

A supports coordinator does the following:

• Locates and secures providers
• Writes and maintains the ISP
• Coordinates waiver funding
• Monitors that services are actually delivered
• Watches health and safety

It is a paid role, funded through the waiver.

A Family Advisor has several distinct responsibilities:

• Mentoring
• Running workshops
• Helping you build a vision
• Offering the perspective of someone who has lived it

It is free, and it is not a substitute for coordination. Nobody at the Network is going to submit your ISP.

The advisor helps your family decide what you are aiming at. The coordinator then turns that into a plan the system will pay for.

If your family member is enrolled in an ODP waiver, you choose your own supports coordination organization (SCO), and the county intake worker is not permitted to steer that choice.

How to Get Connected

To reach the PA Family Network: Call 1-844-PA-Family (1-844-723-2645), email PaFamilyNetwork@visionforequality.org, or visit their program page. Free, statewide, no referral needed.

To talk with us about supports coordination: ECCM provides intellectual disabilities supports coordination across Pennsylvania. You can see the counties we serve and reach the right office from there.

Your Family Is the Constant

Coordinators change. Providers change. Your family is the one thing that does not turn over, which is exactly why the planning should start with you.

Talk to a Family Advisor about the life you want, then talk to us about building it.