Natalie with her biggest advocate, our mother.
Individual Program Plan (IPP)
We are now nearly 6 months into the New Year- have you stuck with your New Year's resolution? If so, great! If you are like many people, and still have not met a certain goal- why do you think that is? Was is due to difficulties with planning out achievable steps to reach your goal?
It just so happens that people with intellectual and developmental disabilities (I/DD) in California have help with this, and have access to a written plan that outlines goals they would like to achieve, and how to reach them. This is called an Individual Program Plan, or "IPP"and is also known as a Person Centered Plan, or “PCP”. Here is a link to Disability Rights California’s paper on the IPP:
The law that guides these plans are found in the Lanterman Act, which are part of California’s Welfare and Institution Codes (CA WIC). The Lanterman Act entitles Californian’s with intellectual and developmental disabilities service supports that are intended to promote independence, inclusion and participation within the community.
There are 21 regional centers throughout the state. Each regional center is an independent private, nonprofit contracted by California’s Department of Developmental Services (DDS). The DDS contracts with the regional centers to coordinate and distribute services and supports throughout the state. DDS is one of 12 departments overseen by California Health and Human Services Agency. Regional centers receive are depend on both state and federal funds.
So, what goes into making these plans? There is definitely a process, and these processes can vary by each regional center.
Nuts and Bolts: The Who, What, When, Where, Why of the IPP
Who makes the IPP?
According to the Lanterman Act, the planning team is responsible for putting together the IPP goals, and steps to reach those goals. The planning team can consist of as few as two people the service recipient (if over 18) and the regional center case manager. If the service recipient is a minor, or over 18 and under conservatorship, the legal representative must attend the IPP, or “planning” meeting as well. It is also common for the planning team to consist of family members, representatives from service agencies involved with the family, or anyone else who is involved with caring for a loved one with an I/DD.
At the end of the IPP meeting, the service recipient, or legal representative should have an idea of the services and supports that the regional center has agreed to fund. The case worker is then responsible for writing up the IPP document, and mailing it to the service recipient. This can take some time, so be prepared.
What does the IPP do?
The IPP, or PCP, is a binding agreement/contract between the regional center and service recipient. The regional center is required to fund for the services and supports the representative and service recipient agreed to at the planning meeting. The plan is an outline for what supports and services regional center has agreed to fund for, and specifies how those will be provided.
A typical IPP will include (with example)): 1) What service is being provided (respite), 2) Which agency will provide the service (Respite Agency X), and 3) How much and for long (6 hours per month over 12 month period). It outlines the goals and objectives that each service is intended to help the service recipient reach. We will discuss Respite care, used at the example here, in a future Blog.
When do you review and update the IPP?
Requirements on frequency of IPP meetings varies by each service recipient, and each regional center. For service recipients on the Home and Community Based Service Waiver, federal requirements mandate annual meeting and updates. If the service recipient is not on the waiver, guidelines require the IPP meeting to be held every 1-3 years. It is important to know that the service recipient can request their IPP is updated at least once a year.
Additionally, an IPP meeting can be requested at any time if there has been a change in the services and supports needed. So, if your sibling experiences a change in living arrangement, an IPP meeting can be requested in order to discuss any change in service. The bottom line is- request a meeting with your regional center case manager whenever there are major changes in the life of the service recipient.
Where do you update and review the IPP?
IPP meetings can take place wherever the service recipient would like! That’s right. A meeting can happen at a school, day program, local coffee shop, the family home, the regional center office, or even at a park! The most important thing to remember is accessibility for everyone to attend, and making sure everyone who you want to attend can attend.
Why do we need the IPP?
This is easy. No IPP, means no service. If the regional center does not have a current IPP for a service recipient, they have the right to initiate the process of closing the service recipient’s case. Having a current IPP is the only way to receive regional centers services and supports.
The IPP is also a place that gathers important medical/familial/social information into one place. This document gives those providing services to your sibling a snapshot of their needs, and helps them get to know their strengths and preferences.
So Why Blog about This.....
In some cases the IPP meeting can be the only mandated time the service recipient and planning team have to meet face to face with their regional center case worker. This means that it is imperative to make the meeting meaningful.
It is also important to remember that there can be frequent turnover with regional center case managers. Why there is turnover (and how to handle it) is another Blog for another time. While this is more than frustrating, it is important to know that having a solid IPP, helps ensure that transitions to new case managers go as smoothly as possible.
1) Review the current IPP.
You can request a copy of the IPP from your sibling's regional center. Have a list of your questions written down in advance. Take notes, and make sure to ask questions during the meeting! The I/DD world is filled with acronyms, and confusing medical terms. It is OK to ask what things mean.
Be knowledgeable about the services and supports offered by your local regional center. Each regional center is required to have their Purchase of Service (POS) guidelines available on their websites to view. DDS has a list of each regional centers website available. Review the guidelines prior to your IPP meeting to get an idea of what services your sister(s) and/or brother(s) are eligible for.
2) Invite the Sibs.
Having siblings of service recipients is important, especially when we are oftentimes the ones who intend to oversee care when our parents are no longer able to. We need to be there to learn the system, the players, and what is happening in our sibling's life. Sibs frequently have one of the longest lasting relationship with their sibling with I/DD. This means that we know our sibling very well and can offer a wealth of knowledge about family history and insight to the general likes and dislikes of our sibling. In other words, we have a lot to contribute! If the service recipient, and/or legal representative agrees, you can request that siblings must be invited to each and every IPP meeting.
For more information on siblings check out the study by Easter Seals.
3) Create Awareness about Abuse and make a Plan
Given the statistics that Joe Shapiro with NPR published earlier this year under the series titled "Abused & Betrayed", abuse amongst the I/DD community is of epidemic levels. I did not know this until my sister became a victim. Given that the IPP is the only time a caseworker meets with a service recipient and their family, and it can be the services funded by the Regional Center where the abuse happens, the IPP is the perfect time to talk about a plan. Dr. Nora Baladerian, of the Disability & Abuse Project, has an excellent Blog about why this conversation is necessary. We need to outline a plan during the IPP process regarding abuse, for the Before/the During/the After. Remember, you can not completely eliminate abuse, but you can be aware and have a plan of action around it. I encourage you to read more from Dr. Baladerian.
On a final note, let's starting advocating for siblings to be included in the IPP process. Let's use this time to talk about abuse, because it happens. The more aware the caregivers and future caregivers are, the better our loved one with I/DD will be cared for in the future.
*Special thank you to Barbara Imle for input on this Blog. She is featured in the film Pursuit of Justice; "...it is a powerful documentary film that, by telling the stories of injustices to specific individuals, demonstrates the need for systemic reforms in adult guardianship and conservatorship systems in all 50 states. It calls for state judicial proceedings to comply with the Americans with Disabilities Act and for the intervention of the U.S. Department of Justice when ADA violations occur. The film is intended to stimulate people with disabilities, seniors, and adults of all ages who care about civil rights, to join a growing network of individuals and organizations that are advocating for guardianship reform."
but it never hurts to have a plan, just in case.