Frequently Asked Questions for Adults with Intellectual Disabilities (IDD) Services in Pennsylvania
What is the term used in Pennsylvania for Intellectual Developmental Disabilities (IDD)?
It depends on the county in which you live. On a national level the term Mental Retardation (MR) has been changed to Intellectual Developmental Disabilities (IDD). In some counties you will see the terms Intellectual Disabilities (ID), Intellectual Developmental Disabilities (IDD) or/and Mental Retardation (MR) being used. The state office has changed its name to Intellectual Developmental Disabilities.
Who determines if I will receive services and supports?
The Office of Developmental Programs is the entity within the Department of Human Services and responsible for the oversight of intellectual and developmental disability services in Pennsylvania. The local County MH/ID Programs' role is to verify eligibility for intellectual disability services through the Office of Developmental Programs.
Eligibility for intellectual disability services through the Office of Developmental Programs requires a diagnosis of an intellectual disability based on the results of objective standardized testing. An intellectual disability is a permanent condition that affects a person's ability to learn and function in daily life that occurs during the developmental period. A diagnosis of an intellectual disability requires that both a person's general intelligence and ability to function in daily life are significantly below average. These two conditions may be present at birth or occur in the developmental period defined as prior to the person's 22nd birthday.
Persons interested in more information regarding eligibility for intellectual services may contact the Office of Developmental Programs by telephoning the Intellectual Disabilities Services Customer Service Line at 1-888-565-9435 or by contacting their local County Mental Health/Intellectual Disabilities (MH/ID) Program Office.
Resources:
The Mental Health and Mental Retardation Act of 1966 (50 P.S. SS 4101 - 4704)
Where Do I Begin?
If you are not registered with the County Office of Mental Health and Intellectual Disabilities (MH/ID), you need to call the office and make an appointment to register for supports or services.
Take documents to the appointment that will help establish that you are eligible for services through the intellectual disabilities system. Some examples are medical, psychological and school records. The County Office of Intellectual Disabilities will then determine if you are eligible for services.
If you are found eligible to receive services and are requesting services now or in the future, you will receive supports coordination. You should have a choice of any available Supports Coordinators and you should be able to meet with them before making your choice. If you do not wish to choose your Supports Coordinator, the county can assign one to you.
Where do I find the contact information for my county program office?
Intellectual and developmental disability services are administered through county Mental Health/Intellectual Disabilites (MH/ID) program offices. The county MH/ID offices serve as a referral source and most services are delivered by local agencies under contract with the county office. The county MH/ID office determines a person's eligibility for service funding and if found eligible a person will receive a supports coordinator.
What Will Happen at Registration? What Do I Need to Bring with Me?
You will be asked to bring information and documents with you including:
Social Security Card (if you have one)
Birth Certificate
Proof of Address
MA Card (if you have one—also referred to as Medicaid, Access Card, Medical Assistance)
The County Intellectual Disability Program representative will ask you to sign a Release of Information form. This form authorizes the County to obtain medical records, including a psychological assessment, and other supporting documents.
If you need assistance with finding an evaluator to do the psychological assessment, your County can help you find someone or you may be able to use documentation from your school records.
What is a supports coordinator?
After you are found eligible to receive services and supports the supports coordinator is the person from the county office that will help you:
Talk with you about what kinds of supports and services would be helpful to you.
Offer you an opportunity to complete an application for the Medicaid Home and Community Based Waiver Program.
Enroll you in services which require completing applications.
Help you develop your individual plan.
Help you talk with individuals or agencies in the community that could support you.
Coordinate and monitor supports and services.
Offer you the opportunity to complete a Prioritization of Urgency of Need for Services (PUNS) form and place you on the waiting list.
Help to identify other types of community supports and services that would help you while you are waiting.
What is an individual support plan (ISP)?
The Individual Support Plan (ISP) provides details about what is most important to an individual with mental retardation so that everyone involved in supporting that individual can focus on those areas. Developed through a Person Centered Planning Process (PCP), the ISP collects information concerning personal preferences, dreams and wishes, medical history/current medical concerns, and communication preferences.
The team that develops the plan may include, but is not limited to: the individual, family/guardian, providers, advocates, friends, Supports Coordinator and surrogate.
The ISP is extremely important because it allows the individual to make choices about their life.
ISPs must be based on assed need.
ISPs must be unpaid, natural supports as well as funded supports.
The ISP must be reviewed annually, but may be changed at any time throughout the year.
The ISP is made up of six sections:
Individual Preferences
Medical
Health and Safety
Functional Information
Financial
Service and Supports
The ISP is a standardized format and entered into the State Home and Community Database (HCSIS).
Supports Coordinators monitor the ISP to make sure services are provided.
What does Person Centered Planning Process (PCP) mean ?
Person centered planning is a way for you to say what is important to you and what is important for you in your life. It helps you figure out how to make the things you want in your life happen.
A person centered plan can help those involved with the focus person see the total person, recognize his or her desires and interests, and discover completely new ways of thinking about the future of the person."
Beth Mount & Kay Zwernik, 1988
Person Centered Planning is an ongoing problem-solving process used to help people with disabilities plan for their future. In person centered planning, groups of people focus on an individual and that person's vision of what they would like to do in the future. This "person-centered" team meets to identify opportunities for the focus person to develop personal relationships, participate in their community, increase control over their own lives, and develop the skills and abilities needed to achieve these goals. Person Centered Planning depends on the commitment of a team of individuals who care about the focus person. These individuals take action to make sure that the strategies discussed in planning meetings are implemented.
What does Prioritization of Urgency of Need for Services (PUNS) mean?
PUNS stands for the Prioritization of Urgency of Need for Services. The PUNS form gathers information about your situation, your needs (current and anticipated) and what services and supports you may need through the Pennsylvania Office of Developmental Programs (formerly Office of Mental Retardation). The information is collected by each county’s Mental Health/Intellectual Disabilities (MH/ID) office, also called that county’s Administrative Entity. The PUNS form describes how soon you will need services and supports. PUNS information helps the county and the state understand and plan for what you need, and when you will need it. PUNS information is entered into the state database, the Home and Community Services Information System (HCSIS). The PUNS form is a planning and information gathering tool. Completion of the PUNS does not mean your service needs can be met at the time you fill it out.
Who needs a PUNS?
Regardless of whether you are enrolled in a waiver, you need a PUNS if…
You or your family member are in need of services and supports that you are not currently receiving.
You think you will need services and supports within the next 5 years.
Why should I complete a PUNS?
The PUNS process helps the county and state understand and plan for your needs and how you relate to others waiting for services. It captures the supports and services you need that may be provided through the Office of Developmental Programs (ODP). The information on the form will help your Supports Coordinator and County/Administrative Entity understand and plan for your needs. The county and the state use the information to create their upcoming annual budgets. It also tells the Office of Developmental Programs the types of supports people are waiting for in each county, to help identify gaps in services and supports in specific areas. The Office of Developmental Programs uses PUNS data for planning and to explain people’s needs to the governor’s office and legislative budget office. The advocacy community uses PUNS information to educate legislators about the needs of people with mental retardation who are waiting for supports and services.
When do I complete a PUNS?
After you register and are found eligible for intellectual disabilities services with your county program, you will meet with your Supports Coordinator to discuss your life situation and determine if you need to fill out a PUNS form. You and your Supports Coordinator will update your PUNS at least once every year for as long as you need a PUNS. Anytime your needs change, you should contact your Supports Coordinator to update your PUNS form. If all your needs are met, and you are not waiting for any services and supports, you do not need a PUNS form.
How do I complete a PUNS form?
The PUNS is completed during a face-to-face meeting with your Supports Coordinator. You can invite other people to the meeting to help you (e.g. employer, advocate, provider, teacher, friend, family members, etc.). You need to review and discuss the areas of need on the form with your Supports Coordinator, and decide which categories or selections apply to you. Next, you and your Supports Coordinator will fill in the information about what supports and services you are currently receiving, and what supports and services you need. It is important that your PUNS form accurately reflects your need, as it is used to help the county and state plan for your needs. Everyone at the meeting will sign the form. Your signature indicates participation only, not agreement.
What do “Categories of Need” mean?
There are three categories of need:
EMERGENCY means you need support immediately (within the next 6 months).
CRITICAL means you will need support within the next 2 years.
PLANNING means you need support more than 2 but less than 5 years from now.
When considering all of the statements under each category of need, you should select all situations that apply to you. You can have more than one selection in each category. For example, you may have a caregiver who is ill and you may also be graduating high school in the next 2 years. Anticipated needs that are more than 5 years away are not captured through PUNS, but should be discussed with your Supports Coordinator.
Why does the emergency category have two sections?
The emergency category is broken into two parts:
The first part is for people who need "out of home" (primarily residential) supports immediately. You would use these selections if you need a new place to live where you can also get the support you require. Remember to mark the type of residential support you need in the Supports Needed section of the PUNS form.
The second part is for people who wish to stay in their own home, or their family’s home, but still have an emergency need for services and supports. The supports might include in-home, employment, day, or any other supports.
If I am graduating from school this year, do I need to wait until graduation day to move into the emergency category?
No, the Office of Developmental Programs defines immediately as "within 6 months." You can move from critical to emergency when you are 6 months from graduation. Ask your Supports Coordinator to update your PUNS when you are 6 months away from graduating. This time period allows for locating and organizing resources. This time frame can be used for any criteria under the emergency criteria.
What happens after the PUNS meeting?
Your Supports Coordinator will enter your completed information from the PUNS form into the Home and Community Services Information System (HCSIS). Your Supports Coordinator will print out a copy of the HCSIS PUNS and mail it to you with a letter within 3 weeks of the meeting. You should look at the PUNS form you receive in the mail to make sure it accurately lists what you need. The letter will have information about your rights and a disagreement form that should be used if you don’t agree with the information on the PUNS form.
What happens if I don’t agree with the information on my PUNS form?
If you disagree with the Category of Need or any other information listed on the PUNS form, you should fill out the disagreement form on the bottom of the letter you received with the PUNS form and mail it back to your Supports Coordinator. You will then discuss the problem with your Supports Coordinator and, if necessary, a Supports Coordinator Supervisor. If the issue is not resolved, it will be addressed by the County/Administrative Entity representative, who will make the final decision. If you are not enrolled in a waiver, all disagreements will be resolved according to the county’s dispute resolution process. If you disagree with the information on your PUNS, you are not eligible for the formal Hearings and Appeals process. However, if you are denied the opportunity to apply for a waiver, you may formally appeal. Also, if you are enrolled in a waiver and you are denied a needed service or support, you can file a formal appeal through the Bureau of Hearings and Appeals. You should know that the Office of Developmental Programs will be monitoring disagreements to ensure the Counties/Administrative Entities are following state policy. If you are concerned that your County/Administrative Entity is not complying with policy or you want information about the process, you can call the Office of Developmental Programs’ toll free customer service number, 1-888-565-9435.
How long will I wait for services and supports?
The most important things that determine when you receive services are the availability of funding in your county and the urgency of your need. Each county gets an annual allocation of funding from the Office of Developmental Programs. Counties prioritize funding based on urgency of need, availability of services to meet these needs, and availability of funding. People already enrolled in waivers must have all their needs met before the County/Administrative Entity can enroll new people. It is important to remember that the Waiting List is not like a bakery or deli line where each person has a number. The County/Administrative Entity matches available resources with individual needs to determine who gets services and when. People in Emergency will have priority, but may still have to wait.
What should I do while I wait?
Waiting for needed services and supports can be frustrating. You can look for natural supports in your community. Natural supports are things people do to help without getting paid. It could be friends or family, church members, co-workers, or neighbors. There may be community organizations that can help. Look into YMCAs, recreation centers, volunteer agencies, and advocacy organizations for ideas and help. Your Supports Coordinator may also give you information about community resources.
Who can I contact if I have questions or concerns about my PUNS form, or the PUNS process?
You can contact the Pennsylvania Training Partnership for People with Disabilities and Families (The Partnership). They offer technical assistance to families and people with disabilities.
Each County/Administrative Entity has a person that can help you. Ask for the "PUNS Point Person." Regional offices also have a person who is a PUNS point person, and the Office of Developmental Programs has a toll free number you can call.
The State Office of Developmental Programs (ODP) has a toll free phone number for you to call if you have questions about PUNS.
Additionally, The Partnership and its participating agencies can answer questions and offer assistance to individuals or their families.
Office of Developmental Programs
Customer Service Hotline - 1-888-565-9435
Customer Service Hotline (Hearing Impaired Only) 1-866-388-1114
Central Office - 717-787-3700
ODP Regional Offices:
Central - 717-772-6507
Northeast - 570-963-4391
Southeast - 215-560-2247
Western - 412-565-5144
The Partnership
Tel: 1-866-865-6170
Web: www.TheTrainingPartnership.org
Achieva
Tel: 412-995-5000
Toll free: 1-888-272-7229
Web: http://www.achieva.info
Mentors for Self Determination
Tel: 814-547-1577
Tel: 724-813-5702
Web: www.mentors4sd.org
Speaking for Ourselves
Tel: 610-825-4592
Web: www.speaking.org
Vision for Equality
Tel: Philadelphia: 215-923-3349
Tel: Harrisburg: 717-233-2424
Web: www.visionforequality.org
Institute on Disabilities at Temple University
Tel: 215-204-3031
Tel: 1-866-865-6170
Web: http://www.disabilities.temple.edu
The Partnership- The Pennsylvania Training Partnership for people with Disabilities and Families
Achieva
Institute on Disabilities
Mentors for Self Determination
Speaking For Ourselves
Vision for Equality
The Partnership is funded by the Office of Developmental Programs, Department of Human Services.
Tel. - 1-866-865-6170
Web. - www.TheTrainingPartnership.org
If I am eligible what types of services and supports are available?
Services and Supports Directory - The Services and Supports Directory is a tool for individuals with intellectual disabilities, their families, and the individual's team to locate services and service providers in the Commonwealth of Pennsylvania. The directory can help you locate particular service providers or search for services and supports provided in an individual's community. This directory does not include information on all providers, only those who have chosen to be listed. You may access the list of providers in the Services and Supports Directory on the Home and Community Services Information System (HCSIS) website.
Available Services - There are a number of services that can be provided to meet the needs of an individual registered with the Office of Developmental Programs (ODP) for intellectual disabilities services. This list of services is subject to change as service definitions change and waiver amendments are approved by the Centers for Medicare and Medicaid Services (CMS). Please contact your Supports Coordinator or the County Mental Health/Intellectual Disabilities (MH/ID) Program to find the list of services and the corresponding service definitions.
Some examples of services include but may not be limited to the following:
Residential Habilitation
Home and Community Habilitation (unlicensed)
Companion Services
Transitional Work Services
Supported Employment
Pre-Vocational
Respite
Transportation
Licensed Day Habilitation
Home and Vehicle Accessibility Adaptations
Therapy Services
Nursing Services
Behavior Support
Supports Coordination
Supports Broker
Assistive Technology
Specialized Supplies
Education Supports Services
Homemaker/Chore
How to Choose an Intellectual Disabilities Provider?
Provider Profiles is designed to serve as a reference primarily for individuals and families so that they may choose intellectual disability service providers based on information that is important to them.
Home and Community Service Information System (HCSIS)
The Services and Supports Directory is a tool for individuals with an intellectual disability, their families, and circle of support to locate services and service providers in Pennsylvania. The directory can help you locate particular service providers or search for services and supports provided in an individual's community. Provider information in HCSIS includes:
Provider Demographics
Corporate Name, Address and Phone number
Contact person
Website address
The services available in your community (County) or nearby communities
Other Non-Licensed Facilities
What is the provider directory? Where do I find it and how do I use it?
While it does not include all providers of service because not all providers are required to hold a license, the Provider Licensing Directory is an easy access directory of licensed human services facilities operating in Pennsylvania. You can access information on providers from across the commonwealth. Begin by selecting the type of service you are seeking from a drop down menu. Providers commonly working with Office of Developmental Programs are listed under the following fields:
Community Homes – (Group Homes with 8 people or fewer)
Large Community Homes Services – (Group Homes with 9 people or more)
Family Living – (Family Living/Lifesharing/Companion Living)
Intermediate Care Facility/Intellectual Disabilities (ICF/ID)
Vocational Facility (Workshops)
Day Training Services for Adults (Facility Based Adult Day Training)
Once you have selected the service type, the search can be narrowed by county, zip code, a specific place (facility name), and/or legal entity name (an agency name). When the criteria for the search are entered and you click "Go," a list of all facilities matching the criteria will appear. The information will include:
The name and address of the provider
The capacity (number of individuals who may live/ work at the facility)
The type of operation (profit, non-profit)
The status of the facility (licensed or unlicensed)
The status of the license (full or provisional). A provisional license means the facility was cited for a regulation violation(s) and is in the process of correcting the violation(s). If the violation is considered minor, the facility may have a full license with an approved plan of correction in place.
You may then use the list provided to contact service providers to find more information about the specific nature of available services. If you are having difficulty locating provider information, you can contact your local County MH/ID office for further information, or call the ODP HelpLine at 1-888-565-9435 (1-866-388-1114 for hearing impaired individuals) for assistance.
http://www.dpw.state.pa.us/dpwassets/providerdirectory/index.htm
What are questions should I ask when choosing a provider?
How can I arrange a visit?
How would you describe the philosophy and values of your agency?
May I talk to individuals and families who use your services?
May I talk with some of your staff?
May I have a copy of your annual report?
May I visit the places where you provide services?
For how long have you provided services and supports in this county and in other counties?
What are the qualifications of the staff that would be supporting me/my relative?
What training do you provide to staff who work directly with individuals? To supervisors?
How long do staff remain with your agency (by position, by site)?
What is the agency's management structure in my county, at particular sites (e.g. Is there an office nearby? Is the site managed from afar?)
How long has the CEO been with this agency? Can you tell me about him/her and his/her background?
How long have other management staff been with this agency?
What are Lifesharing and Everyday Living Options?
Lifesharing, also known as Family Living, supports individuals with intellectual disabilities to live with qualified unrelated adults who provide support in their home. Up to two individuals with a disability can live in a lifesharing home and be supported by ODP funding. Most lifesharing homes are licensed and inspected to ensure the health and welfare of individuals being served. Individuals in lifesharing also have supports coordinators to monitor the quality of services on a regular basis.
Lifesharing means living with and sharing life experiences with supportive persons who form a caring household. Lifesharing is recognized as both a close personal relationship and a place to live. Lifesharers offer individuals the opportunity to be part of a family and to participate in community life. Lifesharers and individuals are carefully matched and supported by qualified professionals to achieve the person’s program objectives. Birth families are encouraged to be part of the matching process and continue to have close relationships with individuals who choose a lifesharing option.
Everyday Living options can be a variety of settings such as lifesharing, as well as support provided to individuals living in their own home, and in the homes of relatives and friends. Services in these settings are authorized based on individual support plans and monitored by supports coordinators on a regular basis as well. Individuals who choose these options come from a variety of places including community homes and Intermediate Care Facilities (ICFs/ID).
What is Base Funding?
Base Funding comes from State and County dollars.
Most of the funding comes from the State and is contingent of the Governors budget.
What is Waiver Funding?
Waivers pay for funding that individuals need to live in the community. Waiver funding can be used to support people living in their own homes, family homes and licensed or unlicensed community settings.
Waiver funds are part State funds and part Federal funds.
There are two Waivers: The Consolidated and Person/Family Directed Support Waiver (P/FDS).
The difference between the two Waivers is the (P/FDS) has a funding limit.
An individual can only be enrolled in one Wavier at a time.
** NOTE: There may be other Waivers available through the Department of Welfare and the Department of Health.
Waiver programs are Medicaid funded. An individual must be eligible for Medicaid to receive a Waiver.
Financial eligibility is determined by the County Assistance Office.
An individual’s assets cannot exceed 2,000.
Once waivers eligibility is established, financial eligibility is reviewed annually for compliance.
If I am having a problem who do I contact?
After a while, if you find the relationship between you and your Supports Coordinator isn’t working, you should be able to choose another Supports Coordinator. In order to do this, you will need to talk with the Supports Coordination Organization (SCO).
When you are having other problems, first you need to contact your Supports Coordinator. If that doesn’t work, then you contact the Supports Coordination Organization (SCO).
If your problem is not resolved, contact the County MH/ID Administrator.
If your problem still is not resolved, contact the Regional Program Manager of the Office of Developmental Programs. The phone numbers are as follows:
Northeast Regional Office, 570-963-4749
Southeast Regional Office, 215-560-2245
Central Regional Office, 717-772-6507
Western Regional Office, 412-565-5144
If you still need assistance after going through the county and regional offices, contact the Department of Human Services, Office of Developmental Programs.
The telephone number is 717-787-3700.
The Toll Free telephone number is 1-888-565-9435.
The Toll Free telephone number for Hearing Impaired (only) 1-866-388-1114
To resolve disputes, it is your right to use fair hearing and due process available through the Department of Human Services Hearings and Appeals. You can get forms to make an appeal from your Supports Coordinator.
What is the Pennsylvania Developmental Disabilities Council (PDDC)?
The Pennsylvania Developmental Disabilities Council is a group made up of people with disabilities, family members, advocates, and state department representatives who work to create favorable conditions for people with developmental disabilities and their families in the Commonwealth. Created under a federal act and Governor’s Executive Order, the Council is both a planning group and a funding body.
What should I know about Fair Hearings and appeals? Where can I find information and help?
Mediation is a way to resolve disputes between you and the County Intellectual Developmental Disabilities or Mental Retardation Program concerning the identification, evaluation or the provision of appropriate waiver services or supports.
http://www.dpw.state.pa.us/foradults/hearingsandappealsprocess/index.htm
Acknowledgment: Pennsylvania Department Human Services