Frequently Asked Questions
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FAQ 2: WAIVERS, Home and Community Based Waiver Programs
Revised Summer 2007
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What is a Waiver?
Waiver is a short way of saying "Medicaid Home and Community Based Waiver Program." Waivers pay for supports and services that eligible people need to live in the community instead of an institution. Waiver programs are funded by federal and state monies. The federal (Medicaid) portion of funding is matched by the state. In Pennsylvania, the ratio is approximately 54% federal to 46% state monies.
Why do we have Waivers?
Katie Beckett was a young girl with significant health care needs. She lived for three years in a pediatric intensive care unit in a hospital. Her parents wanted her to move home. At the time, she was not eligible for Medicaid funding to pay for her care at home because her parents' income and resources were above the financial eligibility limit. If she lived in the hospital or nursing home, their income was not considered. Her parents advocated to have the federal rules changed, and in 1981, Congress created the Home and Community Based Waiver program. This allowed services and supports to be provided in the community and to be paid for with Medicaid funds.
In a nutshell, we have Waivers so that people who receive Medicaid funding can choose community based services in place of institutional or medical facility based care.
Waivers are designed to provide support for people to live and work in their communities. Waiver services can go hand-in-hand with the natural support that family, friends, schools and community organizations provide. Waiver services can be used to support people who live in their own homes, families' homes, or in licensed and unlicensed residential settings, such as group homes, community living arrangements, and supported living. People can receive a few or many services through the Waivers depending on what their needs are. For example, someone who gets all the support she needs in her home from her family might need support to keep her job. The Waiver pays for a job coach to work with her a couple of hours a week. Someone who needs quite a bit of paid support might be a man whose elderly mother is his primary caregiver. His mother is unable to provide all of his support at home, so a Waiver pays for his support to participate in social activities several days a week, to participate on the board of a local non-profit organization, and for someone to assist him on a daily basis with shopping, preparing food, personal care, laundry and cleaning his home.
How does Pennsylvania get Waivers?
For Waivers that support people with mental retardation, the Department of Public Welfare, Office of Developmental Programs (formerly the Office of Mental Retardation) applies to the federal Centers for Medicare and Medicaid Services (CMS) to have Waivers approved. The State must outline eligibility criteria, types of services provided, and assurances about how the services will be delivered to recipients, including how the state will ensure the health and welfare of Waiver participants. Once a state's Waiver application is approved, CMS will monitor the Waiver program to ensure compliance with federal rules. The Office of Developmental Programs (ODP) must submit a renewal request three years after the initial approval and then every five years to continue receiving Waiver funding.
What Waivers are available through the Office of Developmental Programs?
The Office of Developmental Programs (ODP) in Pennsylvania offers two Waiver programs for people with mental retardation. One is the Person/Family Directed Support (P/FDS) Waiver and the other is the Consolidated Waiver. You must meet the eligibility criteria for the Waiver and be at least 3 years old to apply. ODP is in the process of applying for a Waiver to provide services and supports to adults with autism.
The Person/Family Directed Support (P/FDS) Waiver:
The P/FDS Waiver is known as the "small" Waiver because it has a cap of $22,525 (July 2006) per person each fiscal year. This funding can be used to get the support you need to participate in a wide range of activities in your community. With your Supports Coordinator, you will write an Individual Support Plan (ISP) that describes you, your life, your goals and defines the supports and services you need to be successful. Your budget will be based on the needs identified through the planning process and in your approved ISP. The ISP is authorized by your County/Administrative Entity (AE). The P/FDS Waiver cannot pay for residential care in a licensed setting but it can help provide the support you need to live in your own home or your family's home.
The Consolidated Waiver:
The Consolidated Waiver is sometimes referred to as the "big" Waiver, residential Waiver, or the 2176 Waiver. There is no set dollar cap on your individual budget to purchase needed supports that you could receive on this Waiver. The amount of support you receive and your budget will be based on your needs, as determined through the planning process and outlined in your Individual Support Plan (ISP). The ISP is authorized by your County/AE. This Waiver can provide the same supports and services available in the P/FDS Waiver, but also can include out-of-home residential care in the community. With both Waivers, your plan and your supports should be updated at least once per year or any time your needs change.
What supports and services are available through the Waiver?
Supports and services will vary from person to person. The supports you receive are based on your Individual Support Plan (ISP). This plan should be written by you and your family with your Supports Coordinator and any other people in your life that care about you and support you. It could include your friends, your neighbors, your employer, your service providers and your teacher. As a team, you will develop a plan to help you meet your needs and reach your own individual dreams and goals.
As part of this planning process, you will write outcomes that will lay out your goals, action steps and the support and services you will need to reach those goals. Only supports and services defined in Pennsylvania's MR Waivers can be funded under these Waivers. You should review the Service Definitions to better understand what is available to you through the Waivers. You can obtain a copy of the Service Definitions by calling The Partnership's toll free number 1-866-865-6170 and requesting a copy, or through The Partnership website at www.TheTrainingPartnership.org.
There may be things you need that are not covered under the Waiver. Your team can help you find other ways to meet these needs. These other ways can include natural supports, such as a neighbor or friend doing something free of charge. They can also include community supports and services available to all people in your community, like parks and recreation or local community organizations. All Waiver services outlined in your Individual Support Plan (ISP) must be provided to you through the resources of the Waiver. If you are in the Person/Family Directed Support (P/FDS) Waiver, you are eligible to be funded up to the cap for services outlined in your ISP. If you receive the Consolidated Waiver, there is no individual cap. Medicaid rules require that all services approved in your ISP to address your identified needs must be provided to you.
If needed services are denied, reduced, terminated, or suspended, you have the right to appeal. You should be given written notification whenever this happens. There is a formal Fair Hearings and Appeals process in place for you.
Supports and services for the P/FDS Waiver include:
- Homemaker/Chore Services
- Adaptive Appliances and Equipment
- Unlicensed Home and Community Habilitation
- Licensed Day Habilitation
- Supported Employment—Job Finding and Job Support
- Home and Vehicle Adaptations
- Transportation
- Personal Support Services
- Physical Therapy
- Occupational Therapy
- Speech/Language Therapy
- Nursing Services
- Behavior Therapy
- Visual/Mobility Therapy
- Respite Services for the Care Giver
- Transitional Work Services
- Prevocational Work Services
The Consolidated Waiver services are similar, and include:
- Homemaker/Chore Services
- Adaptive Appliances and Equipment
- Unlicensed Home and Community Habilitation
- Licensed Day Habilitation
- Supported Employment—Job Finding and Job Support
- Home and Vehicle Adaptations
- Transportation
- Personal Support Services
- Physical Therapy
- Occupational Therapy
- Speech/Language Therapy
- Nursing Services
- Behavior Therapy
- Visual/Mobility Therapy
- Respite Services for the Care Giver
- Transitional Work Services
- Prevocational Work Services
- Residential Habilitation
- Home Finding
- Education Support Services
- Permanency Planning
Service Definitions for each support or service are written in the Waivers and in the Service Definition Bulletin. Please note that some services have limitations on when and where you receive services, and how much of the service you can receive. A summary of the services and their definitions is available in Understanding the Mental Retardation System in Pennsylvania, often referred to as the "Green Book." (Please see resource listing at the end of this booklet for more information.) Copies of the complete Waivers, the "Green Book" and the Service Definition Bulletin are also available on The Partnership website, www.TheTrainingPartnership.org.
Can I choose who provides services?
Yes, you have a right to choose who provides your Waiver services and supports. Federal rules require that a person receiving supports have the opportunity to choose any willing and qualified Medicaid Waiver provider whose costs are within reasonable limits.
The Office of Developmental Program's policy dictates that all individuals have choice, control, community, relationships, authority, responsibility and the other values set forth in the Everyday Lives doctrine. The principles of Everyday Lives are statewide policy as outlined in ODP Bulletin 00-03-05.
Your County/ Administrative Entity (AE) can provide you with a list of qualified Medicaid Providers. You can also get one on the Internet through the Home and Community Services Information System (HCSIS). Please see the back of the FAQ for the link to that website.
If you choose to, you should have the opportunity to direct your own supports. One way to do this is to use an organization called an Intermediary Service Organization (ISO). An ISO is an organization which will help you with some of the employer responsibilities. This will give you the freedom to choose your support personnel and design your services to meet your specific needs. Every County/AE is required to have an ISO available for you. Once your budget is created and approved by you and your County/AE, you can use an ISO to exercise the authority to manage your support professionals to best meet your needs.
How do I apply for a Waiver?
You can apply for Waivers at your county Mental Health/Mental Retardation (MH/MR) office, also called the Administrative Entity (AE). Waiver application is separate and apart from registration for MR services. You must be registered and eligible for MR services to even apply for a MR Waiver. There is a Waiver Application Form and a Service Delivery Preference form you will need to complete. You can get these forms from your Supports Coordinator or intake worker, at the County/AE office or online at the Department of Public Welfare's website. If you do not receive SSI, there is also a financial form that you may need to complete. In order to be eligible you must meet the following criteria:
- You need to meet the requirements for Mental Retardation services in Pennsylvania (have a diagnosis of mental retardation).
- You must need the same level of care provided in an Intermediate Care Facility for the Mentally Retarded (ICF/MR). This is determined by a Qualified Mental Retardation Professional (QMRP) and a medical evaluation.
- Your income can not exceed 300% of SSI ($1869 per month—2007 figures) and there are limits on the value of your assets. However you can own a home, a car and a burial plot. Questions about financial eligibility can be answered by the County Assistance Office (CAO).
After you apply, you will be notified in writing within 30 days if you are eligible. If you are not eligible for any reason, you may appeal that decision.
Am I entitled to Apply for Waiver funding?
Yes. If you are 3 years old or older and eligible for Mental Retardation services, you are entitled to apply for Waiver. The Waiver application only determines your eligibility to receive Waiver funding. It does not mean you will be enrolled and get Waiver funding. If you believe you are denied the opportunity to apply, or are denied eligibility for any reason, you have the right to appeal.
When I am enrolled on a Waiver, am I entitled to services?
Yes. If you are found eligible for a Waiver and you begin receiving Waiver services, then you are entitled to all of the services you need that are offered in that Waiver, as per your authorized Individual Support Plan (ISP).
What if I am eligible, but they have no money for me?
If you are eligible for a Waiver, but there is no funding available for you, you will be added to the Waiting List. Anyone who will need supports and services in the next five years should complete a Prioritization of Urgency of Need for Services (PUNS) form. This form is used by the County/Administrative Entity (AE) and the state to track how many people are waiting for support, and what types of support are needed.
Unfortunately, there are many people across the state waiting for supports and services. There are some things you can do while you wait. You can use community supports, such as YMCA, church groups, advocacy agencies, and other groups that may have volunteers or programs to meet some of your needs. Additionally, some counties have limited Base funding or Family Driven Support Services (FDSS) funding that may help meet some of your needs. These services and supports should be outlined in an Individual Supports Plan (ISP). You should discuss available resources with your Supports Coordinator while you are waiting for Waiver enrollment. An honest discussion of your needs is critical to obtaining resources. Be honest about what you need and why you need it. You will not be "at the table" when funding decisions are made at the County/AE and state offices, so your Supports Coordinator must have a good understanding of your need to effectively advocate on your behalf.
Is it possible to lose my Waiver after I am enrolled?
Yes, it is possible to lose your Waiver after you are enrolled. You must continue to meet all of the following criteria:
- Eligibility for MR services
- Intermediate Care Facility for the Mentally Retarded (ICF/MR) Eligibility—This means that you have the same level of care needs as someone who would otherwise receive services in an institution.
- Financial Eligibility—There are income and asset limitations to qualify for a Waiver. If you are working, make sure to remember the income and asset limits. Contact your Work Incentive Planning Assistance Program (WIPA) if you anticipate increases in wages.
The County Assistance Office (CAO) does an annual financial eligibility re-determination that covers both your Medical Assistance and Waiver. They will look at your income and any assets you have and make sure that you still qualify. Annually, the County/Administrative Entity (AE) will ask you to have a medical evaluation by your physician regarding your disability to ensure that you still meet the MR and ICF/MR eligibility standards.
What do I do if I have a problem?
You have a few options to address specific problems. You can set up a meeting with your Supports Coordinator, the Supports Coordinator Supervisor, and/or the Administrator. You should document all meetings and phone calls. All decisions concerning Mental Retardation services should be put in writing to you. If you have not received written documentation regarding MR services, request the documentation from your County/Administrative Entity (AE). You could also contact your Regional ODP Manager, or call the ODP toll free customer service number 1-888-565-9435. Advocacy organizations may be able to help you or offer specific information about your situation.
If you are enrolled in a Waiver, you have the right to Fair Hearings and Appeals for certain issues. You should receive a copy of all your rights at your annual meeting, and any time you request one. If your services are denied, reduced, suspended, or terminated, the County/AE must notify you in writing. It is important to act quickly if you disagree with a change in your services. If you file an Appeal within 10 calendar days, most services will remain in place while your case is being heard. When you file for Fair Hearing, you will automatically have a "Service Review." Service Review is a 15-day process where your situation is reviewed by the Regional ODP Office to attempt to reach a quick resolution. If you disagree with this review, you will proceed to Fair Hearing.
Where Do I Go if I Need Help?
The Pennsylvania Training Partnership for People with Disabilities and Families (The Partnership) can provide you with a copy of Understanding the Mental Retardation System in Pennsylvania. Known as the "Green Book," this publication has detailed information about the MR System, copies of important forms, descriptions of the Service Definitions, advocacy group contact information, and checklists for families to use as they navigate the system. It is free to people with disabilities and their families. Please contact The Partnership at 1-866-865-6170 for a copy. It is also available on The Partnership website, www.TheTrainingPartnership.org.
Links to Resources
Service Definition Bulletin www.TheTrainingPartnership.org/resources/odpBulletins.shtml
Current Consolidated Waiver and PFDS Waiver www.TheTrainingPartnership.org/resources/odpBulletins.shtml
Home and Community Services Information System (HCSIS) www.humanservices.state.pa.us/hcsis-ssd/pgm/asp/prhom.asp
Link to Green book (pdf—3.98MB, this is a large file) www.TheTrainingPartnership.org/resources/umrspa/umrspa-20070302.pdf
The State Office of Developmental Programs 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 1-888-565-9435
ODP Regional Point People (as of July 2007):
Central
Patty McCool
Tel: 717-772-6484
Email: pmccool@state.pa.us
Northeast
Robert Conklin
Tel: 570-963-3166
Email: rconklin@state.pa.us
Southeast
Vicki Stillman-Toomey
Tel: 215-560-6359
Email: vstillmant@state.pa.us
Western
Sandy Schalcosky
Tel: 412-565-5144
Email: cschalcosk@state.pa.us
The Partnership
Tel: 1-866-865-6170
Web: www.TheTrainingPartnership.org
The Partners:
Achieva
Tel: 412-995-5000
Toll free: 1-888-272-7229
Web: www.achieva.info
Mentors for Self Determination
Tel: 814-547-1577
Tel: 724-813-5702
Web: www.mentors4sd.org
Self-Advocates United as 1
Tel: Eastern, 215-923-3349 x132
Tel: Western, 724-813-5702
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://disabilities.temple.edu
This information is available in alternate formats, upon request.
