Family Guide to the Individual Support Plan in Pennsylvania

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Family Guide

to the Individual

Support Plan in

Pennsylvania

Department of Public Welfare, Office of Mental Retardation through the Office of Mental Retardation Consulting System

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Welcome

This booklet will help you understand how the Individual Support Plan (ISP) is developed, what type of information it includes, and how it can be a help to you and your family member.

Think about your family member’s life, and imagine all of the information regarding the different areas of growth, needs, supports, and services that you have had to gather and keep organized. Now, imagine one written document that contains all of this information in one place, allowing you to access it easily and use it as a guide in planning for your family member’s future. Such a document exists and is now available for your use. It is called the Individual Support Plan. The ISP was developed by the Office of Mental Retardation (OMR) with input from individuals and families.

This booklet will describe the role of the team in the ISP development process — highlighting how you and your family member can work together with a group of people who know and care about your family member — to arrive at decisions that will affect his/her life positively. This group is called your family member’s ISPteam.

Department of Public Welfare, Office of Mental Retardation through the Office of Mental Retardation Consulting System June 2006

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Table of Contents continued

What happens at an Individual Support Plan meeting? . . . .15 What are outcomes and how can I help develop them

for my family member’s Individual Support Plan? . . . .16 What if I have questions about something that’s in

my family member’s Individual Support Plan? . . . .18 Where do I go to get more information? . . . .19 Whom do I contact if I disagree with my family

member’s Individual Support Plan? . . . .20 Quick Reference: Contact Information . . . .21

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Each one of us decides what will make us happy, and what will make our lives rich, full, and satisfying. These things will be different for each person because we are all individuals with unique opinions, hopes, fears, likes, dislikes, and dreams for our future. The ISPis based on the idea that the same is true for your family member.

Source: Everyday Lives, Making it Happen, November 2001

Pennsylvania Department of Public Welfare, Office of Mental Retardation

Introduction

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4 What is an Individual Support Plan?

The ISPis a working documentthat can be helpful to you, your family member, and other people in his/her life on an ongoing basis.

The ISPis a planning documentthat provides details about what is most important to your family member and you, so that everyone involved in supporting your family member can focus on these areas.

The ISPis a supportive documentto your family member and you, because it collects rich and valuable information. This information may be especially helpful to you in times of emergency, as it can ensure that medical professionals and others are provided needed information.

Your Supports Coordinator must update your family member’s plan annually. However, if any changes occur in your family member’s life, the plan may be revisited or updated as often as necessary.

The ISPcontains information for your family member concerning:

•personal preferences, dreams, and wishes;

•medical history/current medical concerns;

•how your family member communicates; and

•additional information that people will need to know to assist your family member to be healthy, safe, and happy.

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Why is an Individual Support Plan

important for my family member?

An ISP is valuablefor your family member because it is a way for important information and his/her choices to be documented. The ISPcan help in making decisions that will affect your family member’s life such as: where he/she will live, desired activities, communication needs, how to keep the family member healthy and safe, and what is most important for him/her to have a quality life.

The ISPteam will help your family member choose and document services and supports including community supports that can be provided if funding is available. These supports and services can help your family member enjoy life as an active and contributing member of the community.

Keeping your family member in mind throughout the process is vital because the plan will ultimately be used to support his or her life.

The ISPis a person-centered plan,which means that the focus of the plan is your family member, to ensure that he/she has choice and control over his/her life. It helps the people who support your family member get to know him/her as a person.

The better they know what is important to your family member, the better they will be able to provide support in ways that meet his/her preferences as well as needs. The goal is to help your family member have the life he/she wants, while ensuring health and safety issues.

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6 How can I be involved in creating my family

member’s Individual Support Plan?

Your role in developing your family member’s ISPis crucial.

Your input and insight will help make the ISPa living, breath- ing document that will reflect who your family member is, and what he/she wants and needs to be happy, healthy, and safe.

One of the first steps in creating the ISPis for you to collect information about various areas of your family member’s life and things that are important to your family member that others should know. By collecting information from your family member, other family members, and friends, you will be helping to ensure that the information pertains to every aspect in your family member’s life. This will supply others with valuable knowledge needed to provide ongoing support and for future planning.

If you would like to become more familiar with the ISPdocu- ment, you can call your family member’s Supports Coordinator and ask for a copy of an ISPthat has descriptive information about each section. You can also obtain this copy from the Office of Mental Retardation’s web site: www.dpw.state.pa.us.

Use the keywords Individual Support Planin the search box.

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Who can help me with this process?

Your county mental health/mental retardation office will assign a Supports Coordinator who will assist you with the ISPprocess.

The coordinator will:

•help your team gather all the essential information,

•explain how the information will contribute to the final plan, and

•record the information into the written ISPin a way that presents a comprehen- sive picture of your family member.

Your Supports Coordinator can connect you to other people who know about the ISPprocess and

can help you understand it. These people may be referred to as “advocates” or “family mentors.” They can even attend your family member’s meeting with you. Many of them have family members of their own who have ISPs. If you would like this support, you can ask your Supports Coordinator for a list of these resources.

“Having theIndividual Support Planhas made my son’s life more meaning- ful. The process was new to our family, but we found it to be rewarding. Gathering the information along with his team gave everyone a new perspective into his life.”

— Parent, Indiana County

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8 Who else will be involved in developing my

family member’s Individual Support Plan?

It is important to invite people who are involved in your family member’s life to the ISPmeeting. These people will make up your family member’s ISPteam.

The team’s role is to be a resource that can help supply valuable information to be included in the plan. This information will result in the plan being a detailed picture of your family member. Usually, these individuals are involved with your family member on a regular basis. People can provide information in various ways and do not need to be present at the meeting.

People your family member may want to invite to his/her ISP meeting could include:

• Family member’s spouse

• Parents

• Grandparents

• Other family members

• Friends

• Co-workers

• Employers

• Direct support professionals

• Job coaches

• Other service providers

• Anyone your family member would like to have help in developing his/her plan

Each of these people knows your family member in a different way, and each brings a different perspective to the meeting.

This results in the ISPportraying your family member as the multifaceted individual that he/she is.

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9 What information about my family member’s

development and abilities should be part of

the Individual Support Plan?

You will be asked to provide information regarding how your family member has developed over the years, especially if there were any significant problems or delays with walking, talking, or others areas of learning and growing that would be helpful for the team to know about at this point in your family member’s life. If your family member has experienced any of these delays, does he/she need any special equipment or device to help him/her complete certain tasks today? You will also be asked to supply information regarding the best way your family member learns new tasks, and how your family member tells you what he/she wants.

Other areas that will need your input will focus on your family member’s educational background, employment information, and/or social/emotional information. Some helpful guiding questions referencing these areas may include:

• What is/was important about your family member’s experiences in school?

• What does your family member like or dislike about tasks at work? Is he/she happy with his/her job?

Are there other jobs in the community your family member would like to learn about?

• Does your family member know how to make and keep friendships?

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How will the ISP ensure my family member’s

choices and preferences are understood

and respected?

The choices a person makes are based on personal likes (preferences) and priorities. The ISPincludes sections that describe the things in life that are most important to your family member. It documents your family member’s personal interests, any activities he/she enjoys or might like to try doing, and how preferences are communicated. At your family member’s ISPmeeting, the members of the team will have a chance to share all they have learned about your family member including the things they like and admire about him/her. Their remarks can be recorded in the ISP. Having this type of information in the ISPensures that anyone providing support to your family member will know how to do so in a way that is consistent with his/her personal preferences.

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11 How will the Individual Support Plan help

keep my family member safe and healthy?

Helping to ensure your family member’s health and safety is one of the primary functions of the ISP. Current medical conditions, past health issues, and any assistance your family member may need to stay healthy are described in the ISP.

This could include help with going to doctor appointments, taking medications, or eating a healthy diet.

The ISPalso documents any help your family member may need to stay safe in his/her home or in the community. It addresses day-to-day safety issues such as crossing streets, awareness of strangers, and use of appliances. It also describes the assistance your family member would need in emergency situations.

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12 What if my family member has trouble

communicating his/her needs?

The ISP has been designed to help you share and document how your family member communicates so that you may share this valuable information with other people.

If your family member cannot speak or has difficulty expressing his/her needs, a helpful way to uncover what he/she is trying to say is to take a look at his/her body language and behavior.

Ask yourself the question, “What kind of body language or behavior does my family member use to show me when he/she is upset or happy or when he/she needs or wants something?"

As you observe your family member’s body language and behavior, you learn how he/she may respond to certain situations, and how you can best give him/her assistance in those situations. This information will be very helpful to everyone providing support.

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13 How can the Individual Support Plan

help address my family member’s

financial security?

The ISPdocuments financial information to ensure that your family member remains financially eligible for benefits and services, which may affect Social Security, medical assistance, and/or waiver funded supports. Documenting this information will also help to ensure that financial resources and benefits will continue to be available and accessible to your family member in the event something would happen to the primary caregiver(s).

The financial section of the ISPhas been broken down into three key areas:

1) Financial Information -Does your family member have any income? This income can come from Social Security benefits, wages earned on his/her job, and other sources.

2) Financial Management Issues –Does your family member need or want to work on any money management goals, or need to learn how to budget his/her money?

3) Financial Resources –Other than his/her income, does your family member have any resources or funds that he/she has saved, or that you have saved on his/her behalf, such as a life insurance policy? Does he/she have his/her own checking or saving accounts?

Who currently takes care of his/her finances?

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14 What if my family member

has behavioral concerns?

If your family member engages in behaviors that might make it difficult for him or her to live successfully in the community, it should be addressed in the ISP. In addition, a Behavioral Support Plan may be developed to help him/her. This additional plan supplements the ISPand focuses on helping your family member and the people who support him/her figure out the reasons for the behaviors and, when possible, change the things in your family member’s life that may be causing them.

If your family member has a Behavioral Support Plan, a sum- mary of the plan will be included in the ISP.

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15 What happens at an

Individual Support Plan meeting?

Prior to the ISPmeeting, your family member’s Supports Coordinator will ask the members of the team for information they have about your family member and then organize all of the information. At the ISPmeeting, the Supports Coordinator will lead and guide conversations based on this information to complete the ISP. ISPsare updated annually or more frequently if needed.

It is important to keep in mind that completing an ISPis an information gathering and sharing process. The information discussed at the meeting is very powerful and will later prove to be a valuable tool in helping your family member.

An important part of creating the ISPis discussing what your family member would like to do with his/her future. The team, which includes your family member, will discuss the things in your family member’s life that he/she may want to change and the things he/she wants to remain the same. The team will use all of the gathered information to develop a sense of what is currently most important to your family member. This will form the basis of the actual planning for your family member’s future. It also leads to a shared commitment by the team to take action and make a difference in your family member’s life. In theISP, these plans for the future are called outcomes.

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16 What are outcomes and how can I help

develop them for my family member’s

Individual Support Plan?

Outcomes are the essential building blocks that will help your family member tailor his/her specific supports and services.

Any service your family member receives should relate to something that is important to him/her. Outcomes represent what your family member wants, needs to change, or would like to maintain in his/her life. Using the outcomes as a guide, the ISPteam can determine what actions, services, and supports are needed. When identifying services and supports, the team considers all available resources, including natural supports in your family member’s community, such as friends, family, neighbors, local businesses, schools, civic organizations, and employers. Each service should directly connect to one or more outcomes. Having outcomes documented can also help you know whether you are making progress toward the identified outcomes.

An important part of connecting services to outcomes is having open discussions with your family member and his/her team.

By keeping the lines of communication open, you and your family member will start to think of new and creative ways to help him/her achieve his/her life’s dreams and aspirations.

When developing outcomes, keep in mind that they can represent desired changes or describe important things that should be maintained. Outcome development builds on information gathered during the ISPprocess and signifies a shared commitment to take action that could make a difference in your family member’s life. It’s crucial to address barriers and obstacles that may affect your family member’s success in achieving the outcome, especially if these obstacles can impact his/her health and safety.

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After outcomes are developed and services and/or supports are identified, the individual and his/her family, with the team, consider all available resources, including natural supports in the community such as friends, family, neighbors, businesses, schools, civic organizations, and employers. OMR offers a set of services, if funding is available, that can be utilized to support your family member’s needs. A directory of these services and supports can be accessed through your Supports Coordinator or at https://www.humanservices.state.pa.us/hcsis-ad/.

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18 What if I have questions about

something that’s in my family

member’s Individual Support Plan?

If you have questions or concerns about something in your family member’s ISP, contact your Supports Coordinator.

Your Supports Coordinator can be a great resource in making sure that information that is represented in the plan is accu- rate and clear. Never be afraid to ask your Supports Coordinator or Supports Coordinator’s supervisor questions if you are unclear about information that is in the ISP.

The final ISP should be understood clearly by anyone who reads it and by those who provide supports and services to ensure the individual is receiving the quality of life he/she deserves. Remember that informational changes can be made in the ISPeven after it has been completed.

“I received a telephone call from a mother. She stated how impressed she was with the Individual Support Planand the comfort she felt knowing that, should something hap- pen to her, any person could come into her home, read the ISP, and know exactly who her son is and how to provide all the necessary supports to assure that he is well taken care of.”

— Supports Coordinator, York County

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19 Where do I go to get more information?

Pennsylvania Department of Public Welfare Office of Mental Retardation

Health & Welfare Building, Room 512 PO Box 2675

Harrisburg, PA 17105-2675 Telephone: 1-888-565-9435 Website:

www.dpw.state.pa.us/Disable/MentalRetardationServices/

Parent to Parent of PA

Telephone: 1-800-986-4550 PA Calls Only Main Office: 717-540-4722

Fax: 717-657-5983 TDD: 717-540-4722

Website: www.parenttoparent.org Email: info@parenttoparent.org

The Pennsylvania Training Partnership for People With Disabilities and Families

Institute on Disabilities at Temple University Ritter Annex, Room 423

1301 Cecil B. Moore Avenue Philadelphia, PA 19122 Telephone: 1-866-865-6170 Fax: 215-204-6336

Website: www.thetrainingpartnership.org

Pennsylvania Protection and Advocacy (PP&A) 1414 N. Cameron Street, Suite C

Harrisburg, PA 17103

Telephone: (Voice) 717-236-8110 or 800-692-7443 Telephone: (TTY) 717-346-0293 or 877-375-7139 Email: ppa@ppainc.org

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Your first contact:

Supports Coordinator

If not resolved by Supports Coordinator, contact:

Supports Coordinator’s Supervisor

If not resolved by Supports Coordinator’s supervisor, contact:

County MH/MR Administrator/Administrative Entity For contact information about your County MH/MR Administrator/Administrative Entity, call the Department of Public Welfare, Office of Mental Retardation, Customer Service

Number at 888-565-9435 or look up the contact information for your county at pacounties2.org/mhmrpaap/membership.html

If not resolved by County MH/MR Administrator/Administrative Entity, contact:

Department of Public Welfare, Office of

Mental Retardation, Customer Service at 1-888-565-9435

For further information on mediation and appeals, visit the DPW website and use the key word mediation.

http://www.dpw.state.pa.us