Q & A for Parents and Guardians of People Who Get Brain Injury Program or Developmental Disability Services

BDAP is the Brain Injury and Developmental Disabilities Advocacy Project. This is a pilot program funded by the Department of Disabilities, Aging, and Independent Living (DAIL) to provide independent advocacy regarding BIP or DD services to people who are on Brain Injury Program services or Developmental Disability Services programs. This includes conducting monitoring visits with service recipients at home, taking and investigating complaints, offering know-your-rights training, and making recommendations for changes or improvements to the service systems based on what we learn in providing these other services.

As a pilot project, BDAP will operate only in Franklin and Grand Isle Counties.

What are monitoring visits?

During the pilot, we will conduct at least 24 visits to people on the BI or DDS programs in their home setting. We will choose people to visit so that we can meet with people in different housing settings, people with different levels of need for supports, and people both with and without guardians.

Our goal is to get to know the people we select, give them a chance to share what they like and don’t like about their home or services privately, and ask for help with any problems or complaints they may have.

Monitoring visits are a chance for BDAP to learn about many different parts of each person’s life and how well or poorly their services are going. As we get to know people, we will also be interested in learning how satisfied people are with how the Settings Rule is being implemented in homes. Once Conflict-Free Case Management is implemented, BDAP will offer an independent means for advocacy for individuals in a new case management system. We think having an independent advocate will be very important to understand what is working, and what changes people want to see as Conflict-Free Case Management is implemented. Conflict-Free Case Management is not expected to be fully implemented until sometime in 2025.

Do meetings have to be private?

No. We expect some people may not want a private meeting, especially at first. We will work with the person we are visiting, home providers, case managers, and guardians, to honor their preferences and support needs.

Individuals who receive services have the right to meet with the BDAP Advocate privately, but they can always decide who attends a meeting.

Do meetings have to be in the person’s home?

We know some people may not want to meet the BDAP advocate for the first time at home. We can meet the person elsewhere. We can also set up follow-up visits as we get to know people.

As we get to know service recipients, we are mindful that some BIP and DDS recipients may be nervous about meeting a new person, may not understand yet why we are visiting, might want support to meet with us, or might not be comfortable having a private conversation.
We will work with the person we are visiting, and people who support them like home providers, case managers, guardians, and family, to honor their preferences and support needs.

We will always offer the person the chance to talk with the BDAP advocate privately and confidentially. It will be their choice to accept or decline that offer.

DAIL has authorized BDAP to have access to any home or facility where an individual receives services funded by either BIP or DDS. For most individuals who live with a shared living provider or in a group home setting, at least some services are provided in the home. DAIL expects contracted service providers to allow BDAP access to their homes.

However, when a parent or family is not contracted to provide support in their home, they are not required to allow BDAP access to the home. While it is optional to grant BDAP access to the home, providing access to the person who receives services is not optional.

Therefore, if BDAP is investigating a complaint or conducting a monitoring visit for someone who lives with a family member and they don’t want to provide access to their home, they must work with the BDAP advocate to find an alternate place to conduct a site visit.

When the BDAP advocate is visiting and learning about concerns with the home or the services, they will always begin by listening to the person who is receiving services.

Many BIP and DDS recipients can communicate about wanting their parent or guardian to support them during a monitoring visit. We expect that some people will want parents or guardians to participate, and others will not.

• If the person can communicate and does not want their parent or guardian to be present when BDAP visits, we will honor this preference.
• If the person can communicate and wants their parent or guardian to be included in a monitoring visit, we will honor this preference.

In these cases, BDAP will want to hear from the parent or guardian to help us get to know the person getting services, to have the parent or guardian share their feelings about the person’s services and supports, or make complaints.

• We also know some BIP and DDS recipients will not be able to communicate effectively with BDAP.

In these cases, we will also talk with their parent or guardian.

It will be up to BDAP to determine whether a person cannot communicate their preferences for a monitoring visit with us. During these monitoring visits, as well, we will want to hear from the parent or guardian to help us get to know the person getting services, to have the parent or guardian share their feelings about the person’s services and supports, or make complaints.

Call us at 1-800-889-2047 or fill out our form and we will call you back. Your information will be sent to Legal Services Vermont, which screens requests for help for both Vermont Legal Aid and Legal Services Vermont.

Once a complaint is received, we will attempt to verify the complaint with the BIP or DDS recipient, even if the person has a guardian. If the person can confirm they want BDAP to investigate and help resolve the complaint, we will continue with the complaint. We will communicate with the parent or guardian based on the permission we have to do so from the service recipient.

If the person tells BDAP not to investigate or resolve the complaint, we will close the complaint.

If the person cannot understand the issue and/or cannot communicate their preferences regarding the complaint, we will follow the directions of their guardian, Power of Attorney, or other surrogate decision-maker.

BDAP will take complaints that have to do with BIP or DD services and supports. These can be issues of actions, inactions, or decisions by provider agencies, staff, contractors, or others in the system. These can be issues that may affect the health, safety, welfare, or rights of people who are receiving BIP or DD services and supports.

Examples of complaints BDAP can investigate:

• The person is being abused, neglected, or exploited.
• Problems with a home provider or staff in staffed or supervised housing model, such as the provider ignoring a person’s preferences or needs, or is not acting consistent with their rights.
• Problems with a case manager, such as communication, follow through, and other issues.
• Staffing problems, such as training, dignity and respect, and other issues.

When BDAP receives a complaint, responding will generally involve the following steps:

1. Confirmation: If possible, BDAP will confirm that the person who receives services agrees there is a problem and wants it to be investigated.
2. Goal Identification: Identify with the person, or their guardian, how they would like the problem to be resolved.
3. Investigation: Gather more information about the problem from the person, and other people who have information relevant to the complaint.
4. Resolution: Advocate for their desired outcome through the lowest level of intervention appropriate. 
   • Some complaints may be able to resolved through informal advocacy during conversations, or email. 
   • Some complaints may be resolved when BDAP attends a meeting with the person and their team. 
   • If the complaint is a legal problem, BDAP may refer the issue to a lawyer.
5. Closure: The service recipient, and their guardian (if appropriate) will receive a letter summarizing the complaint, goal, investigation, and resolution.
   • BDAP cannot make guarantees that it can achieve the identified goal. When advocacy is completed, the complaint may be closed because the goal was achieved, partially achieved, or could not be achieved.
6. Referrals: With permission, if BDAP learns of problems that are outside the scope of the project, BDAP will refer complaints elsewhere.
   • For example, complaints that have to do with Choices for Care, nursing homes, or residential care homes, can be referred to the Vermont Long Term Care Ombudsman (VOP).
   • Similarly, BDAP can refer legal problems that are not about BIP or DDS to other projects within Vermont Legal Aid, to other legal service providers, or to the VBA lawyer referral service as appropriate.

During the pilot program, BDAP will conduct at least one know-your-rights training. This training will be focused on providing information to program recipients.

Case managers work for a Designated Agency, Specialized Services Agency, or for BIP, a provider agency.

BDAP is part of Vermont Legal Aid, and works for the people who are in the program.

Budgeting and service allocation

DAIL is ultimately responsible for deciding what kind of services a person gets, and how much their budget will be for different services.

BDAP is an advocacy program. The BDAP advocate can help ask for changes if you or the person receiving services thinks DAIL made a mistake through informal advocacy or internal review.

Quality

DAIL is responsible for doing quality assurance, which looks at how well an agency is doing its job overall. If the DAIL Quality Assurance team finds there is a problem, it will tell the agency what it needs to change, and will give it help to change. This can be done through a corrective action plan and technical assistance.

BDAP is focused on learning from the individual, and how well (or poorly) the agency is doing their job in providing services to that person. If things need to change, an advocate helps to try to get those changes. If BDAP sees similar problems or challenges for many people, it may make recommendations to fix systemic problems, or work with self-advocates and guardians to advocate for systemic changes.

Abuse and neglect

DAIL also contains Adult Protective Services (APS). APS investigates when it receives reports of abuse, neglect, or exploitation of vulnerable adults. It can provide protective services to keep vulnerable adults safe from their alleged/substantiated abuser during and after an investigation. After an investigation, if abuse is substantiated, the abuser is placed on a registry. People on the registry are not supposed to work with vulnerable people.

Sometimes, people do not want APS to get involved in their life. An advocate can help BIP and DDS recipients decide if they want APS to know about a situation they are in, and look for other ways to help keep them safe if they do not want BDAP to report to APS.