East Bay Parents Housing Network is a group of parents and family members of individuals with developmental disabilities which meets monthly to explore housing and other service options for adult family members. As a result of discussions about the challenges faced by many in the group, it applied for and received its first mini-grant from All In Alameda County in 2016. The 2016 grant funded a listening session focused on the experiences of families with using existing crisis services in the county. As a follow-up to the 2016 session, the group applied for and received a second mini-grant in 2018 to hold more listening sessions. The goal of these sessions was to solicit input on how to improve Alameda County services for crisis prevention, intervention, and stabilization for individuals with developmental disabilities who exhibit extremely aggressive, self-injurious or destructive behavior.
Listening sessions were held in the spring of 2018 with family members of individuals with developmental disabilities living in Alameda County who had experienced severe behaviors to the degree that outside support was needed. Listening sessions included one in-person group session, one web-based group session, and six one-to-one listening sessions. Denise Bradley, Executive Director and Founder of Harambee Community Services, facilitated the two group sessions and assisted with planning and reporting. The individual interviews were conducted by parents Nina Spiegelman and Irene Litherland using the same list of questions as in the group sessions.
Participants were asked to respond to these questions:
- Describe the types of crises that your family member has experienced.
- What are the barriers to your family member and the primary caregivers managing any crisis safely?
- What are one or two things that would help your family member not go into crisis?
- What are one or two things that would help your family member recover from crisis safely?
- What are one or two things that would help you and other caregivers help your family member recover from crisis safely?
Sixteen family members participated and discussed the needs of their nineteen sons and daughters with developmental disabilities. The participants had family members with developmental disabilities who had engaged in the following severe behaviors:
- Physical aggression: hitting, biting, attacking, including attacking the driver while driving, throwing a knife at family members, throwing heavy objects at family members
- Self-injurious behavior: banging head such that windows break or tooth falls out, breaking glass by pounding with both forearms
- Outbursts, blow-ups, screaming in public situations
- Property damage: turning over large furniture, pulling down light fixtures from the ceiling or TV’s from walls, throwing heavy objects into neighbor’s yard
- Bolting: running out of home or program and down the block, trying to exit moving vehicle, exiting car in traffic at signal intersection
- Suicide attempts
Several had also experienced abuse by staff, including sexual abuse, physical abuse, or emotional abuse and threats.
The living arrangements of the participants’ family members with developmental disabilities at the time of the listening sessions were the following:
- Living with family but searching for out of home residential placement - 7
- Living with family – 6
- Living outside of family home – 6 (all were in supported living arrangements; none were in group homes but most had prior group home experience)
Participants were asked to distribute 4 votes among 11 different services to indicate which services most needed improvement in order to meet their family member’s crisis needs. Participants could use all 4 votes on one service or distribute them among several. The results are shown in the following chart.
The following are summaries of key barriers discussed by participants in the four service areas that were rated as most in need of improvement in order to assist family members.
Long-term housing which supports behavioral needs provides a foundation for success. Without it, the likelihood is greater that the individual will have repeated crises. Finding housing that can provide a safe environment for the family member is a major concern. What works is for the individual to live in a therapeutic environment which includes all the services needed to help the person feel or do better. This can’t be replicated in the family home and is not replicated in most supported living or group home arrangements, despite the stated level of care. This concern and the need for crisis prevention and intervention services to be integrated into all other services was repeated throughout the sessions. Long-term housing is the primary place for that integration, without which crises repeat.
Crisis response services in their current form are sometimes successful, or partially successful, with individuals who respond to verbal phone conversations, are social, and don’t mind talking with someone they are not familiar with. However, it is an unproductive model for individuals with little or no language, low cognitive skills, or discomfort with strangers. It also tends to work only when issues are simple, not complex. At times, a positive experience with a crisis response worker can later result in the consumer wanting to see the crisis worker again and creating an incident to do so. Concern was expressed that records of what an individual has said during this crisis intervention are not kept confidential and can be misinterpreted by others accessing the individual’s file, such as potential providers years later. For the majority, the most effective crisis response method is having well-planned crisis supports integrated into the service systems regularly used by the individual.
Training and coaching of direct care staff are key to providing crisis support needed in any situation. Residential staff members in all housing settings are reported to rarely follow behavioral plans that were written by an assigned behaviorist. Many participants reported that staff members were not trained to respond to severe behaviors even when the families had been told all staff working with a provider were trained. Most staff working with individuals who are deaf do not know sign language and so cannot communicate with the individual being supported. The lack of communication leads to crisis situations that could be mitigated by staff members who know sign language and are trained to work with individuals who are deaf. To be successful with individuals who are deaf, crisis response techniques need to be appropriately adjusted.
Due to the lack of training as well as very limited supervision, abuse was experienced by some family members with developmental disabilities. Abuse occurred in group homes, supported living arrangements, and day programs. Instances described included sexual abuse, physical abuse and emotional abuse. Although reported to authorities and investigated, all providers continued to provide services after the victims were removed from the program. Quite often there was no new replacement service provided to the victim. In addition to abuse being an extreme violation of the human rights and dignity of the victims, it resulted in trauma and increased likelihood of future aggression or self-injury. In some cases, the aggressive behavior of the individual increased, likely as a form of protection against future abuse. There is a clear link between abuse and severe behaviors that can’t be overlooked in evaluating crisis prevention and intervention.
Regional Center case management, communication and decision-making were listed as additional crisis-related services by the organizers due to the important role of the Regional Center in connecting individual consumers to appropriate services. Frustration was expressed with a lack of assistance by Regional Center case managers to locate needed services. Situations were described in which the severe behaviors of the family member presented imminent danger to the consumer and others in the home, including children and seniors, and yet no help was received by the family in locating residential placements. It was felt that Regional Center staff did not comprehend the severity of danger in the home. Family members had to find a third party to provide information about available services so that they would know what to ask their case manager for, rather than the case manager being the guide. The fact that case manager turnover is frequent, with often a different case manager assigned each year, creates barriers in continuity and understanding of the needs of a particular consumer.
The following are summaries of main ideas that emerged in response to the questions about what would work better to prevent crises and to intervene during crises.
Family Experience of What Works: Prevention
Crisis prevention services work when built into programs rather than being separate services. Integrated systems of crisis support services allow for key components for success, including trust, rapport, and knowing the individual well. This allows the staff or other supporter to focus on the individual’s strengths and changes the relationship. Wrap-around services without any gaps create individualized crisis support. What works is having flexible supporters who can step in to assist when needed. This includes the individual’s community and support system, peers, coaches, and support service workers. A lot of flexibility is required. Support needs to be adjustable according to daily need as it is not possible to define what will be needed on a particular day. If support can’t be adjusted, a crisis will ensue at some point, and be followed by trauma, leading to further crises. Ultimately, direct behavioral and crisis services should be folded into all regional center services for the person with these needs. When the individual is in the right program with staff who care for them, they have less need for outside crisis intervention. The right structure is often very successful.
Crisis prevention is successful when the individual is supported by well-trained staff members who respect them. The staff members have learned how to observe the first signs of agitation or escalation, and respond to the individual by implementing the behavioral plan effectively. Close supervision and coaching of staff is essential as is staff viewing their role as providing companionship, not adult day care or babysitting. Consistency and clarity of expectations are important factors. Staff accountability is also very important. Additionally, paying a higher hourly rate to staff working with individuals with severe behaviors attracts and retains more skilled workers.
Role play can help some consumers practice prevention. In some situations, one can discuss with the consumer better ways to do things. The right medication can also make a difference in some cases. It can also be helpful for the consumer to have a relationship with police so that they know each other and the police know the individual’s challenges. Independent consumer calls to Crisis Response Project can be positive. In many cases, the consumer is aided by living outside the family home. If living alone, attention has to be paid to avoid isolation. Living with a few others is preferable as long as there is space to retreat. It is important to use caution and care when matching housemates.
Families and consumers would be helped by having places available for the consumers to go for overnight respite stays, such as camps. Family members can receive therapy and/or training while the consumer is away for stabilization or respite. Parent and family training can be very helpful, including hands-on safety training. Good communication with parents helps all parties better understand approaches which are effective.
Family Experience of What Works: Crisis Intervention and Recovery
As with prevention, crisis intervention works best when built into programs, not separate services. The same elements of relationship, trust and knowledge of the individual are essential in crisis intervention. In all programs, staff training in crisis de-escalation techniques such as ProAct, CPI, Safety Care or Ukeru is important. It works well to use every crisis as a learning opportunity by later reviewing and analyzing what happened with key staff, family and other supporters. A therapeutic placement with a team who works with skill, planning and keen observation is needed, so that all aspects of care are already in place and can intervene. Sometimes an outside person can help to talk the consumer down. It is effective if staff know individualized responses specific to the consumer. Staff implementation of the behavioral plan is key, with revisions made if shown to be needed. In some cases, the consumer may call Crisis Response Project independently with positive outcomes. Many consumers in crisis need clear, concrete, frequent repetition of the rules. For individuals who are deaf, staff ability to communicate and know specialized techniques for crisis resolution is important. A non-punitive system of rewards and consequences tailored to the individual is effective for some. Many individuals, both those who are deaf and those who are not, can be successful with lower staff support ratios if there is a way for them to communicate.
In the two group listening sessions and six individual listening sessions, many potential recommendations were raised. Several themes emerged related to an alternative approach of integrating services into one set of wrap-around services. This would allow for various supports and interventions to be professionally planned, coordinated and overseen in the individual’s home and regular daytime program. Some discussions assumed a particular service continued to stand alone while other discussions jumped to this approach of creating new, more integrated options. Any appearance of conflicting ideas is a result of the variety of conversations and perspectives in the different discussions about possible solutions. All suggestions were given in the spirit of improving outcomes for all with severely challenging behaviors. Below are summaries of possible solutions in the four top service areas which participants felt were most in need of improvement.
Long-term housing which supports behavioral needs is essential to preventing crisis situations and responding effectively to any which occur. The first step is to recognize that the current offerings of supported living and group homes do not meet the needs of individuals with severe behaviors. This gap in the housing system needs to be assessed by evaluating the real-life experiences of consumers and family members rather than duplicating existing services which don’t meet this need. A willingness to work with families offering honest evaluations and creative solutions is needed. Currently required is the development of various short term options for crisis stabilization: (a) a 6 month individualized stabilization programs geared to this population and (b) a variety of short -term safe places to cool down while being evaluated. Families and caregivers can be trained while the individual is receiving stabilization support. The clearest long-term solution is to have housing support services include well-planned, highly structured, and skillfully implemented therapeutic wrap-around services to provide necessary structure, professional staff oversight, and skilled implementation. Both crisis prevention and crisis intervention services would then be encompassed in these housing services.
Crisis response services for this population require more than one model. The current model only works for some of those who are both highly verbal and very social. A different model is needed for most others with severe behavioral needs. Again, a well-implemented therapeutic model is needed, with wrap around services implemented by experienced and qualified staff members who are trained in the individualized responses that are effective with that particular consumer. Staff need to have the ability to handle a range of mental health issues. If a mobile team is used, ensure that available staff are located so that the unit can actually reach the site of the crisis quickly. Accountability is needed through frequent service reviews, user feedback and open meetings. In many cases, the ability to do limited, minimal, supportive hands-on intervention is required. Follow up with the IPP team, including the family, needs to be timely, meaningful and appropriate. Coordination with the Regional Center case managers should be improved.
Training and coaching of direct care staff is greatly needed on a regular basis to best support the individual’s specific needs and interests, and to implement the individual’s behavioral and service plans. Staff need direct training as well as regular meetings to review incidents, share and learn from observations, and adjust behavior intervention plans accordingly. Staff members also need more oversight for implementation of all areas of their work. With training and regular team discussion, staff develop more confidence which in turns produces a more productive environment for the individual. The ability to communicate with consumers is vital to staff effectiveness. When working with consumers who are deaf, staff need to know sign language. Training by an agency that works with individuals who are deaf is most effective. The challenging behaviors of individuals who are deaf often disappear once they have staff with whom they can communicate. The need for training in this area can produce very significant results. Likewise, educating staff about how to positively communicate with consumers who are not deaf is critical for the successful prevention of crises and for intervention strategies during crises. Since many severe behaviors occur as a form of communication, providing communication tools to staff is essential to minimize negative behaviors. Staff also need training on how to be observant of the individual. Family members as well as agency staff all need training on how to physically manage severe behaviors safely. In many cases, training family members in crisis management techniques can replace or delay for years the need for costly out of home placements.
Regional Center case management, communication and decision-making are important areas to improve in order to implement and create access to many of the other ideas for solutions. Individual Program Plans should include more detail regarding the consumer’s goals, needs, and Regional Center commitments to services, including more accountability by listing who will do what and by when. A good model is the public education system’s legally required Individualized Education Plan with specific goals and reporting periods. Improved case manager training on behavioral support needs and crisis is essential. Better trained and informed case managers with more accountability and follow through on identifying and accessing services for consumers. A reduced case load is needed to facilitate reasonable case manager assignments in crisis situations. A specialty crisis case management unit to work specifically with this population could be more effective. It would be helpful to families to have all key terms defined in a consistent and accurate manner.
In order to have a fuller profile of the consumer and deliver better services, a mental health component should be added to the initial assessment of potential consumers. Full neuro-psychological evaluations should be available from qualified psychologists. There should also be a behavioral/mental health section in the statement of consumer needs and in the Individual Program Plan document for each consumer.
Another recommendation is that the consumer case file that is sent to prospective service providers include only relevant information, describe successes as well as any current concerns, and present all information in the context of the current wishes and needs of the consumer. Regional Center staff members who actually know the consumer well should prepare the file that is sent to potential providers.
Participants envisioned a more effective system of crisis support services integrated into regular daily support services, especially housing. Staff would be well-trained, paid at a premium to work with potential severe behavioral challenges, closely supervised on each shift, and able to respond to crisis situations in their service programs. Currently many families are in immediate need of comprehensive services, including crisis intervention, cool down, stabilization, respite, and fast tracking for placement with appropriate supports. Services should follow the person and be integrated into other aspects of the consumer’s support plan. The need for highly trained and supervised staff is underlined by the connection between abuse and crisis as well as resulting trauma. The problems related to crisis services are multi-faceted and the solutions must also be.
For more information, please contact Irene Litherland at EastBayParentsHousingNetwork@gmail.com