The Executive Committee of NYC FAIR has taken some time to think about what can be done to address the situation and the concerns. We have shared our response with OPWDD and others.

Each time a potential issue of alleged abuse or neglect in OPWDD services and supports surfaces in the media, there is anxiety and concern from families.  To diminish these occasions, we propose a collaboration between OPWDD, the Justice Center, families, and providers to shift our focus from just reacting to developing  data  to identify risk factors and effective preventive measures.  While physical injuries, neglect and deaths are the highest priority, we cannot overlook potential psychological abuse as well.

We know that all agencies must report data about incidents to  OPWDD and in some cases to the Justice Center. These agencies are required to prepare an annual report to leadership identifying trends.  We believe it is essential to collate and analyze this data on a statewide basis with the goal of identifying the following:

• Is it possible to identify which individuals’ characteristics appear to increase the risk of abuse or neglect. (e.g., nonverbal, history of aggressive behaviors to others, or self-harm.)
• What was the staff to resident ratio at the time of the incident?
• What time of day did these incidents occur?
• Were there technological deterrents in use such as door alarms or other measures to prevent elopement?
• How extensive was the abuse and neglect prevention training the staff received prior to the incident? 
• Are there any noticeable trends by geographic region?
• Is the individual a risk to others requiring a higher level of training and supervision?
• Have agencies with minimal incidents of abuse and neglect identified best practices that can be shared with all?

We are confident that there are many other issues that may emerge creating an opportunity to lower the incidents of abuse and neglect.   Most importantly, we hope that we can bring together all interested parties to address this critical issue with the attention that it deserves.

As Federal regulations lay out:

“We encourage States to consider implementing quality improvement processes as part of their incident management systems, as quality improvement processes can help states to promote the health and welfare of beneficiaries by addressing systemic issues in their HCBS programs. We also note that the purpose of tracking and trending critical incidents is to assist States in understanding patterns that require interventions to promote improvement and prevent the recurrence of harm to beneficiaries.”

Welcome

Rachelle Kivanovski moderated

Allison McCarthy, OPWDD

Megan O’Connor, OPWDD

Abiba Kindo, OPWDD

Cathy Varano, CDNY

Randy Bolton, Parent, NYC FAIR

Danielle Lanzetta, SANYS

OPWDD links-What is the Life Plan?

Person Centered description: https://opwdd.ny.gov/providers/person-centered-planning

What is the LifePlan: https://opwdd.ny.gov/providers/what-life-plan

LifePlan Outcome Measures: https://opwdd.ny.gov/providers/life-plan-outcome-measures

The LifePlan is supposed to be a ‘person centered’ plan that is supposed to  include overarching safeguards, life goals, including health care and DD services. It must meet Home and Community Based (HCBS) settings rules

It is different from an IEP or ISP in that includes health care and behavioral health.

OPWDD is partnering with the CCOs, to refine and strengthen their part of the Life Plan process.

Preparation

It is helpful to look at the previous Life Plan before the meeting to see if there are changes you see that need to be made. It is also helpful to get information from providers and the Care Manager about any proposed goals or issues in advance.

Making Changes

The Life Plan can be altered if there is a change that isn’t accurate.

For some minor changes, the Care Manager can make notations in a person’s electronic health record and then formally change the life plan at the next review.

If it’s a more substantive change, the Care Manager can do an addendum and an official modification. They can convene the team to discuss changing specific goals, and involve the  OPWDD regional field office if it means increasing hours for a specific service or requesting an additional service.

Reinforce what is meaningful to you.  for example, you can include very specific ideas – insisting on certain doctors, hospitals and ER., types of recreational activities, etc.  This is important as people’s  Care Managers  change for a variety of reasons.

Life Plan Follow-Up

After the Life Plan is written, it is sent to you to review, approve or change what is in there.  There is a 45 day window to finalize the plan but want it to be only a few weeks. Then it goes to the providers.  You are given a copy,

What if Goals are not being met because of the lack of availability of programs or staff Care Managers should ask if there is something else that can be done instead while they  work on staffing and capacity.   There should be some acknowledgement in the Life Plan as to why a goal is not being met, acknowledging the  lack of availability.

How the goals of the Life Plan are translated into everyday life

If it stays as a piece of paper it is not very helpful.  The provider of both residential and Day services  is supposed to communicate with the staff and then create specific Staff Action Plans to talk about how they will achieve those goals.

The Staff Action Plan (SAP) which is used by Certified Residences and Day Programs is drawn from the goals in the Life Plan.  The providers are required to educate the staff on each individual’s SAP and share the document with the Care Manager within 60 days of the LifePlan meeting.  Currently, there is no requirement that the SAP be shared with the member or family, but OPWDD states they encourage providers to share the SAP with the individual and family.  You have the right to ask for it.

For people in Self Direction the Broker is supposed to create a Staff Action Plan (SAP) who sends it to the FI, should send a copy to the Care Manager and hopefully to the person/self director.

Care Managers are supposed to monitor the goals during their scheduled check-ins. Those are informal. The meetings are the formal review.

How the CAS (Certified Assessment System) used for the Life Plan

According to OPWDD the CAS looks at all the key areas of a person’s life: living skills, health, behavior and supports. OPWDD says they use multiple assessments. The Care Manager is supposed to use the CAS to inform the planning process and identify possible unmet needs.

Regulatory Items

The Life Plan has to include certain specific content to meet regulatory requirements. The new HCBS (Home and Community Based Services) Settings Rule has specific requirements about allowing individuals in certified settings access to keys to their home and room, have a locked bedroom door, unlimited access to food and visitors.  How these rules are being implemented and all requested modifications to these rights must be documented in the Life Plan.

OPWDD also requires specific documentation regarding need for Family Reimbursement and other items within the Self Direction budget be included.

Request for changes centering around the use of durable medical equipment to make them be more individualized to the person’s needs.

Health Management

There is concern that at this point the health care focus is only on preventive care, which is important but there are those with complex medical and/or behavioral health needs that are beyond the expertise of Care Managers who don’t have a nursing or medical background. Each CCO functions a bit differently – some have a system to escalate to someone with the appropriate expertise,  but others less so.

OPWDD added that they reviewed a set of high needs individual Life Plans to identify opportunities for learning and strengthening the ability for CCOs to move towards the next step to strengthen their clinical capacity.

OPWDD Quality Oversight

OPWDD Division of Quality Improvement also conducts ongoing reviews of many  Life Plans monthly and compares them to the person’s record, provider documentation and interviews with the individuals and their circle of support.  They provide feedback and recommendations for improvement to the CCO and try to identify issues and trends that may need to be addressed system wide.

How can the Life Plan help the care of my loved one after I am unable

Apart from the LifePlan you may want to consider creating a Letter of Intent to detail what you would like to see for your family member when you are gone. It can be as detailed as you wish: what is your child’s favorite color, food. Who are your family members’ doctors and what is their medical history.

Here’s one example: https://www.rubinlaw.com/blog/what-is-a-letter-of-intent-do-i-need-one-for-my-child-who-has-special-needs/#:~:text=The%20goal%20of%20a%20letter,into%20a%20new%20caregiving%20routine.

Another example:

https://www.specialneedsplanning.com/parents-guide-to-the-special-needs-letter-of-intent

The Life Plan does not need to be in the First Person for someone who is non-verbal or has limited verbal skills.  Does not need to be written as “I am “ can be “So and so wants”

TELL GOVERNOR HOCHUL TO INVEST IN DSPS & PEOPLE WITH IDD

The Governor is working on this year’s budget now. We need to get her attention, so she understands the importance of our workforce for people with Intellectual & Developmental Disabilities (IDD) and their families

FOR THE PAST TWO YEARS, THERE HAS BEEN NO STATE INVESTMENT for The Direct CARE STAFF who work for the not-for-profit agencies, just those who work in State Operated Facilities. 

Please take 5 minutes to call Governor Hochul to urge her to include money for Direct Care Staff who work in non-profit provider agencies as one of her budget priorities

Instructions:

Step 1: Call Governor Hochul’s office at 518-474-8390, Press 3, then press 2 to speak to a person or 1 to leave a message (NOTE: you may be on hold for a long time if you select to speak with a representative!)

Script: My name is [YOUR NAME] from [YOUR CITY/TOWN] and I am a (person with IDD/family member of a person with IDD/friend of a person with IDD). I am calling to urge Governor Hochul to include money, in her Executive Budget Proposal for Direct Care Staff who work for the not-for-profit providers who support people with IDD. These workers are essential to the health, safety, and quality of life of people with IDD, but earn barely above minimum wage and struggle to support their own families.

Our state has a terrible worker shortage because NY doesn’t pay a living wage for non-profit Direct Care Staff.  We need Gov Hochul to include a wage increase for Direct Care Staff who work for NON PROFIT IDD PROVIDERS in her  Executive Budget proposal. Thank you!

Step 2:

Please click on this link so we can track the number of calls to the Governor. https://forms.gle/DcGgBUkNgbtPnmxX9