Frequently Asked Questions
The Office for People With Developmental Disabilities (OPWDD) was created in 1978 as an independent cabinet-level state agency, largely because of the need for an autonomous entity to implement the closure and downsizing of residential institutions (i.e. Willowbrook, etc.). OPWDD serves more than 120,000 New Yorkers with I/DD. Because of family engagement, only 1200 remain in traditional “institutional” care.
A person is self-determined if they feel they are able to decide how they spend their time, who they are friends with, where they live. For people with a developmental disability self-determination means being able to have real control over one’s life. Self-determination is a movement among disability communities that acknowledge and support the ideal that people with I/DD have supports that are tailored uniquely and specifically to that individual.
Some people with developmental disabilities can clearly express their wishes and needs and are able to make choices independently. Many others can become self-determined by having family, friends, and trusted professionals help them choose how they want to spend their time and with whom.
- Having control over community engagement: paid or volunteer work, continuing education, recreation
- Choosing who supports you: family, coworkers, friends, support staff
- Deciding where you live: an apartment with a roommate, a house with friends, alone or with family
- Being able to set the rhythms and priorities of your day: what time to eat, when to go to sleep
- Having the right (with any needed assistance) to control the allocation of a budget and to choose desired supports
Self Direction (SD) is a way of providing services that gives people with developmental disabilities and their families increased choice and control over their lives while living in the community. Currently over 20,000 New Yorkers are enrolled in Self-Direction.
Anyone who is eligible for OPWDD services and enrolled in the Home and Community Based Services (HCBS) Waiver (that waives the individual’s right to an institutional level of care) can choose to self-direct their services. Self Direction is not just for people who require minimal support. The amount of funding the person gets depends on the level of need. The DDP2 assessment takes the answers to the questions and creates a Personal Resource Allocation (PRA) that is the maximum dollar amount for an individual's Self Direction Services. Consider the option of pursuing the Department of Health’s Consumer Directed Personal Assistance Program to augment the need for supervision. This will require coordination of supports with the Care Manager and the Broker. It can be done!
The money comes from Federal and State Medicaid funds and some state only funds.
A person choosing Self Direction Services can choose if they want an agency to help them self-direct (agency-supported Self Direction Services) or they may choose to manage their budget and staff with the help from a Fiscal Intermediary (FI) and Support Broker (Self Direction with Budget and Employer Authority). Employer Authority enables individuals to hire, manage and dismiss staff. Budget Authority provides participants with a flexible budget to purchase the supports and services they need to live in the community.
OPWDD explains the steps here: https://opwdd.ny.gov/system/files/documents/2020/02/family-friendly-guide-to-sd-1.27.pdf
To begin the process of choosing self-direction and a self-determined life, visit OPWDD’s Front Door. and attend an Introductory Session at your local Developmental Disability Regional Office (DDRO) or virtually. Learn more here: https://opwdd.ny.gov/get-started/information-sessions
The Fiscal Intermediary (FI) is an agency that provides administrative and billing support to a person who chooses Self Direction. They conduct background checks of self-hired staff, bill Medicaid and NYS for services, pay staff, track expenditures and provide monthly statements. There are actually two types of Brokers. A Start Up Broker helps the individual write up the plan of services and develop the budget. A Support Broker helps the person manage their services.
Each person who uses Self Direction has a budget based on their particular profile. Among the things the Self Direction pays for are self-directed staffing support, camp, community classes, coaching for parents, health club and organizational memberships, household related items and services, paid neighbor, transition programs, transportation, family reimbursed respite, phone service, internet, clothing and utilities.
There are some significant barriers to accessing and utilizing Self Direction. Self Direction is a complex program, so a participant must have a strong circle of support, such as parents, siblings and friends in the community, to effectively manage their services. The application process can take months. Additionally, because of the increasing number of people seeking Self Direction, there are not enough Fiscal Intermediaries or trained brokers. Once the Self Direction budget is launched, many people have difficulty finding staff to hire, particularly given the extensive background checks of prospective hires that can take months to finish. At present, there is no central background check, so even if prospective staff is cleared through one Fiscal Intermediary, they must start the process all over to work for a person with a different Fiscal Intermediary. There is also no uniformity among Fiscal Intermediaries regarding their rates of pay or even what services they cover, and OPWDD is not providing consistent oversight and enforcement of uniform standards for Fiscal Intermediaries and Brokers.
Everyone goes through an assessment process. There’s an assessment at the Front Door, there’s an assessment by the Care Manager and sometimes there’s an assessment by the Broker. Currently OPWDD is using 2 assessment tools: DDP2 (Developmental Disabilities Profile 2) and CAS (Coordinated Assessment System) OR CANS (Child and Adolescent Needs and Strengths (CANS) Assessment) FOR children under 17 years.
Currently the DDP2 is the assessment tool used to general a score that reflects the person’s support needs and is used to determine the Personal Resource Allocation (PRA). It is highly recommended that a caretaker, Broker be present during any assessments to ensure that the person’s needs are carefully recorded. Remember, a person is NOT independent if they require support, reminders, or cannot complete the task. The CAS is being conducted to gather information to eventually replace the DDP2.It’s good practice to include in your family member’s Life Plan that ‘no assessments are to be conducted without the presence of the caregiver/guardian/parent and the Sel-Direction Broker.
For more information about the CAS and CANS go to the OPWDD Fact Sheet.
Click here for information about CAS prepared by Care Design NY’s Individual & Family Member Advisory Board.
You are on your way! There are many steps and people to connect with. The Front Door liaison provides information about connecting and submitting an application to one of the regional Care Coordination Organization that serves your region. Here comes the paper storm! Get prepared with keeping track of emails and applications mailed and assessments conducted in one place. We recommend a 3-ring binder using Table of Contents as a guide for creating tabs.
Self-Direction starts with a vision: Consider this 1 minute video: https://inclusionalberta.org/fms-online-guide/visioning-is-conversation/. Parents/guardians/caregivers are encouraged to have conversations with many people to create a vision for the disabled person (regardless of age). Vision Planning has many levels: short term goals to just get started; medium term to identify new opportunities and to reflect upon the identified short term goals; long term vision planning addresses the overarching goals such as ‘independent living in the community’, ‘employment or volunteer opportunities’, ‘healthy living’.
Anyone over the age of 18 years old, who does not live with the person served and who can pass a background check and has a clean driver’s license record (if Com Hab Staff will be using their car to transport your son). Each Fiscal Intermediary has an application process. The Support Broker and the individual’s circle of support can help guide potential staff through the process, but it is the responsibility for the staff to complete paperwork and make an appointment for fingerprinting.
Finding people to hire as Com Hab Staff requires using your own personal networks: friends’ adult children, people in the community from your church or synagogue, people in the community that know your family member such as prior teacher’s aides and bus matrons. Basically, anyone you identify as showing kindness and patience with your family member. A potential staff will value their ability to be a supporter for your family member’s goal for self-determination.
Potential Com Hab Staff come from a variety of backgrounds. There are on-line trainings created by OPWDD and the Support Broker will explain the rules for the specific FI. It is the responsibility of the Circle of Support to provide training specific to the needs of the person served and best practices for managing challenges and delivering support in ways that are appropriate for the person. Good staff training is hard work and is the foundation for a long term relationship.
Guidelines to consider as you ADVOCATE (not FIGHT) for your family member’s support and services.
- Have realistic expectations
- OPWDD Services: Here Today Gone Tomorrow
- Grass is NOT always greener on the other side.
- If it doesn’t sound right, do your research; ask questions. The more educated YOU are the less dependent
- Read documents before signing
- Begin with sugar and honey
- In advance: know the facts of what you are asking and looking for
- It’s always easier for the other person to say “NO”
- Don’t stop at the first no!
Family members make the best advocates. We applaud your ambition to learn and support the community. Potential support brokers must attend a series of four basic classes provided by the OPWDD regional offices. These classes are Self-Advocacy/Self-Determination; Person-Centered Planning; Broker Training Institute; and Self-Direction Budget/Template. Many brokers take extensive trainings beyond the basic in order to fully understand the processes and to best support the Self-Direction community. Many new Brokers seek out a mentor to help get them started. OPWDD has a mentorship program.
Community Habilitation is a service authorized by the Home and Community Based Waiver that creates the Self-Direction Service model. Com Hab Staff's fundamental purpose is to facilitate and promote independence and community integration. The full definition can be found In the Home & Community Based Waiver currently in effect and linked at the Resources Page.
Each person’s Self-Directed Service Plan will have different goals for Com Hab Staff to address as generated by the Life Plan and Staff Action Plan.
Yes! A Self-Direction Plan is meant to be flexible and to meet the changing needs of the person served. It is customary for the Circle of Support team to meet twice a year to see how the budget is meeting the needs of the person. At this time adjustments can be made with either a full budget amendment or a simplified cost-neutral budget amendment. The Support Broker can explain. In the event the person served has emergency needs, the Broker and the Care Manager are to be notified to address any changes in services and supports. The Broker can make changes to the Self Direction Services Budget. The Care Manager can update the Life Plan to authorize additional services need to address the emergency.