MODULE 7. TRANSITION

Having planned for how to pay for housing and having located a future home the transition process requires careful attention. For people relying on multiple strands of financial and social support ensuring continuity is paramount.

Seth Greenman, Master Housing Navigator from Region 1 provided significant advice and input to this section.

Leaving a place where a person has lived for some time is always a challenging prospect whether it is their family home, a certified setting or moving on from an existing home. For a person with I/DD the challenges are compounded by the need to ensure preparedness for their new environment and continuity of their support. The person will need to prepare for the tasks of day-to-day living, taking care of themselves with help as needed. They will need to think about how they will feel about leaving where they have lived, how to stay in touch with people with whom they want to continue to be friends and the initial shock of living alone or with different people. They will need to ensure a smooth transition of their support services and the funding for those services, especially for people who are changing systems or entering a new system of funding and support.

In person-centered planning we have learned that the people we support too often hear that they “are not yet ready”, or “we will do that sometime” and in housing people hear “they are not quite ready to move on”. These responses tend to turn into an indefinite delay - no one is ever fully ready. While it is important to understand risks in transition and to address those risks as much as possible, it should not amount to an infinite delay.

Early focus on the knowledge and skills a person will need is helpful. Including these skills as tailored to the individual person in the person’s Individualized Education Program while in school, in their transition plan from school to adult life, and in their Individualized Support Plan or Life Plan as an adult is important. Learning these skills requires that the person assume responsibility for themselves and the people they live with. These skills need to be learned over years, preferably from the earliest point possible; frankly they may be more helpful than many of the academic skills we tend to focus on in school.

Each person is going to be different and will need to learn different situation-based skills. This Guide does not seek to provide that education but there are various curricula that focus on the basic skills that someone might need if they are to live more independently. These skills include things like laundry, food shopping, health management, safety, travel and money management.[1]

Transitioning benefits and supports
OPWDD provides two types of transition subsidy for people who are moving into a home where they are responsible for the residence (i.e. their name is on the lease or mortgage). For those who are moving from certified settings, the transition subsidy is Medicaid-funded and is termed Community Transition Services or CTS. In OPWDD’s 2019 Medicaid waiver the stipend was limited to $5,000 per person inclusive of security deposit and for one occasion only. [2] For people moving from any other setting into their own place (e.g. from a family home into their own apartment), the stipend is limited to $3,000 plus security deposit, and it is state-funded through OPWDD’s Housing Subsidy, (formerly ISS). The Housing Subsidy related transition stipend is also a once-per-lifetime service with a few exceptions for emergency situations that are at the discretion of each Regional Office. In both instances the stipends are not advances; they are reimbursements for actual (qualified) expenditures to provide for the basic furnishing of the new home.

The NY Alliance created a brief explanatory webinar regarding the transition subsidies, available at https://www.youtube.com/watch?v=4rRODGrfYu0&feature=youtu.be

A smooth transition requires that all of the person’s benefits and supports are transferred to the new environment. For example:

SSI or SSDI
If the person is coming from a certified setting it is possible that the provider agency operating the certified setting is the Representative Payee. That role needs to be transferred either to a trusted family member or friend or to a professional representative payee such as a Fiscal Intermediary or another community-based agency outside of the pool of OPWDD provider agencies. The person may have accumulated savings while in the certified setting that must be transferred, for example, some agencies deposit any excess in a resident’s account into a Pooled Trust, and the person may or may not wish to continue such an arrangement. Any funds held at transition by the certified provider agency as rep payee are sent back to social security, which then sends them to the new rep payee agency. This is time consuming and often produces a lag in benefits, which is why the person should consider two options:

  1. The savings be withdrawn by the person and moved first into a separate account which they can access during their move.
  2. The rep payee transition happens prior to moving while the person is still living with the support of the provider agency.

SNAP
Similarly, a person receiving SNAP benefits will need to take control of their own Electronic Benefit Transfer (EBT) card, either in person or with the support of someone they trust.

Community Habilitation Services must be scheduled to commence on the day that the person moves into their new home. If they are coming from a certified setting, the services at the certified setting stop on their final day and the CommHab must begin immediately. It is possible for a person to pursue residential CommHab while still living in the certified setting as long as they are not in a Day Habilitation program full time. This can be done either through an agency-supported/direct provider CommHab option or through Self-Direction. Even though it may be limited, it allows the person to begin hiring and training CommHab staff prior to the move.

It is not possible to have any parallel transition time as Medicaid only funds one service at a time, so planning is essential to ensure continuity.

Assistive Technology
If the person requires enabling technology it is important to identify who owns their current equipment and what they will need to do to ensure continuity of their support needs/internet service and who will help them to make sure that their technology works and is reliable.

The range and capability of Assistive Technology as it relates to housing is very broad. To learn more about the subject view “Assistive Technology” presented by Meghan O’Sullivan as part of the “Statewide Learning Institute” in 2019https://youtu.be/kTR-J13WTlk

Personal Finance
To varying degrees people living in the community will exercise control over and access to their own money. They and their support people will need to establish a local bank account, obtain an ATM card, and have help in ensuring that they use their resources wisely, including planning for everyday or major purchases. The person and their professional and nonprofessional support should agree on a degree of oversight which preserves autonomy but addresses risks such as being taken advantage of or missing critical payments.

 

Medical Services
A person coming from their family home may have to transition from a pediatric care practice (many people with I/DD continue to receive primary care from a pediatrician well into adulthood) to an adult primary care doctor. If they are coming from a certified setting the provider may have been linked to an Article 16 or Article 28 clinic and been providing regular clinical visits and wrap around medical services. Living more independently will necessitate establishing new relationships, as well as learning how to interact with physicians. For many people seeking to live more independently, they may be leaving a setting (certified or otherwise) where someone is responsible for oversight of their medical information, including appointments, lab work, physician recommendations, etc. Online patient portals in conjunction with a plan for ongoing check-ins and support are important considerations to ensure continuity. If a person receives additional behavioral health support that must be considered, especially if it is likely that long-term relationships with providers may change. A helpful resource in this transition is “My Health, My Choice, My Responsibility” a series of seminars created in partnership with Self-Advocates to assist people with I/DD transitioning to adult medical resources.[3]

  • Medication Administration  

“Under the state’s Nurse Practice Act the only person permitted to administer medication if an individual is not living in their family home or a certified setting and is unable to administer the medication themselves is a Registered Nurse (RN). This clearly limits how many people with even modest medical needs can live and be supported in the community.”[4] Assistive technology can enable many people who need scheduling or dosage reminders to help them take their medication. A provider agency may agree to train the CommHab staff per Approved Medication Administration Personnel (AMAP) procedures, or have the work closely supervised or coordinated by a Registered Nurse. An alternative is the ability of self-hired staff working under Consumer Directed Personal Assistance Services (CDPAs) funding from the New York State Department of Health to perform nursing duties. These duties can include assistance with medication by the personal assistant, who is trained by a family member or another person who acts as the consumer’s surrogate”.  It is not clear why this is available under the DOH Waiver and not under OPWDD’s Waiver, but it is possible for a person to receive services under both waivers as long as services are not provided at the same time.

If a person’s medication is delivered to them their new address must be in effect to ensure continuity.

Moving
Creating a plan for the movement of furniture and belongings is an important step in a successful move. The person and their Circle of Support may be able to work with local furniture retailers to schedule delivery for the day of the move, or furniture may be delivered in advance as needed. Either way, the person’s belongings and any transition stipend purchases or furniture must be prepared and ready to move. Also, a moving company could be considered if not cost-prohibitive, and this expense may be eligible for reimbursement through transition stipend funds. Additionally, if furniture will require assembly, it is important to plan for this to prevent furniture orders from sitting in boxes and remaining inaccessible to the person. If equipment is needed for safety or accessibility, ensure a plan for its installation ahead of time as much as possible, which may require advanced communication with a property manager or landlord.

While it may appear obvious, ensure there is a plan for turning on and starting utilities prior to the move day to prevent disruptions in service. This is especially important for phone and internet services if the person will be relying on these services for communication or technology support. It is important to discuss who will be notifying the post office of the address change to prevent missing mail. Prior to the move, it is also beneficial to review local emergency services and make contact to inform them of the needs of the person who is moving, especially if they may need specific help in the event of an emergency. As part of this process, the person with their supports should establish and review an emergency plan, including an evacuation plan and emergency phone numbers with a contact list. Prior to the move, it is also beneficial to outline a plan for the presence of paid and unpaid supports during the move and in the immediate days and weeks after. Frequent check-ins or visits can allow for discussion of new concerns and direct observation of challenges in the home that the person may not be communicating.

Amid all the move planning, it is important to ask what the person’s plan on the day of the move is. Some people prefer to keep a typical schedule by heading to work or day program and then to their new home. In these situations, it is important to ensure transportation has been notified and plans confirmed prior to the move day. Other people prefer to be a part of their move directly by moving boxes and setting up furniture or indirectly by sitting and watching. Either way, it is essential that the person who is moving be central to the planning process, including identifying his or her role the day of the move.


[1] One such helpful resource is the “Independent Living Skills Program” from CP of NY State. This can be found on the website of the NY Housing Resource Center.
[2] OPWDD Application for 1915(c) HCBS waiver NY 0238.RO6.00 Oct 01 2019 page 371
[3] My Health, My Choice is available at https://www.wihd.org/resources/resource/health-self-advocacy-my-health-my-choice-my-responsibility  retrieved May 2020
[4] Report to the Housing Task Force, NYSACRA 2015 p.28 https://nyhousingresourcecenter.starchapter.com/images/downloads/report_to_the_housing_task_force_final.pdf retrieved June 2020