Needs Assessment Residential Services for Persons with Significant Behavioral Support Needs Ramsey County Developmental Disabilities Section, May 2008

Overview  Background  Methods  Summary of Findings  Specialized Homes?  Next Steps

Replacement After Crisis Data indicates that when a person is admitted to crisis from any type of placement, there is a strong likelihood that they will not return to their placement of origin. -(MCCP) Metro Crisis Coordination Program

Autism Spectrum Disorder and Behavior Behavior AsstWith autismWithout autism Low33.3%59% Medium58.9%36% High7.9%6%

Two Main Questions What living environments would be most appropriate for consumers leaving crisis placement services? What environments might prevent the need for crisis services to begin with?

METHODS FOR FINDINGS Over 80 people (county case managers, residential providers, and parents)  Online Survey  4 Focus Groups  7 Semi-Structured Interviews * Not comprehensive. Subjectivity, Short duration, no consumer input and limited family input.

Environment Learning & Communication BiomedicalMotivation History Relationships -Northern Arizona University Institute for Human Development Positive Behavior Support Behavior Is Complicated

Five Common Themes  Community Integration  Supports and Staffing  Physical Environment  Resources  Roommate Compatibility

#1 Community Integration “There needs to be a willingness to stay in it for the long haul. Individuals with very aggressive behaviors can make changes and live in the community, but it takes time.” -Provider “ Our kids have very few or no friends.” -Parent “I have seen the most successful integration occur when the neighbors know the clients in the home and invite them to be a part of the community.” –Case Manager

Community Integration  Home maintenance  Transportation  Community openness/engagement  Priority with provider and ID team  Family involvement  Adequate staffing levels  Natural supports

#2 Supports and Staffing “Staff turnover and change is doubly disruptive for people with Autism.” -Case Manager “Stable staff, clear and consistent behavioral outcomes.” -Provider “Staff who know individuals very well. It takes time to get to know someone.” - Parent

Supports and Staffing  Training and experience  Stable, long-term (low turn-over)  Patient, caring and committed  Specialty Staff (Behavior Therapists, Nursing, etc.)  Adequate Staffing levels  Supports that build skills and help develop friendships  Gender

Supports and Staffing (Cont..)  Communication devices and preferences  Focus on environment vs. fixing person  Help with transitions and predictable environments  Team work and trust between staff  Working the plan post-crisis

#3 Physical Environment “A safe place that feels like home.” - Parent “Decision makers sometimes want the environment to look appealing to them rather than be functional for the person.” -Provider “If you can get a placement with only two people, no one ever leaves.” – Case Manager

Physical Environment  Space  Less roommates  Need for more diversity in options for set-up (apts, duplex, etc.)  Quiet environments  Neutral Décor, soft lighting  Clean and well maintained

Physical Environment (Cont.)  Access to sensory stimulation (swing, whirlpool, trampoline, rocking board)  Backyard fencing, durable items to prevent property destruction  Private space for families to visit

#4 Resources “There seem to be no options for semi- independent living.” - Parent “Money.. Its always money.” –Case Manager “You have to be able to pay staff more than $11.00 to risk being assaulted or having a consumer elope and a VA filed against them and to have consistent staff” - Provider

Resources  Modifications  Options for semi-independent living  Funding to follow innovation  More waiver allocations  Staff compensation and benefits  Staffing levels  Respite  Family knowledge of crisis services

#5 Roommate Compatibility “People should be able to choose who they live with.” -Parent “Ensuring good client mixes within the home. Not just filling a bed for the sake of filling a bed but filling it with someone who will be a good match for the other people in the home.” -Provider “Good matching of housemates is important.” -Case Manager

Roommate Compatibility  Choice  Careful planning for placement  Daily routines and rituals  Less people

To what extent do the current living environments for Ramsey County consumers with developmental disabilities have the following factors? SURVEY QUESTION  Physical Accessibility  Cultural Relevance  Personal Privacy  Roommate Compatibility

Percent responding “All or Most” All (N=67) Providers Only (N=42) Case Mgrs Only (N=25) Physical Accessibility 41.5%39%42% Cultural relevance %17% Personal Privacy 87.3%95%75% Safety 95%97%92% Roommate compatibility 61.3%72%41%

Another Question… What about homes specifically for persons with behavioral support needs or Autism?

“It Depends” Proceed very carefully…

On one hand…  Staffing can be more specialized with training targeted to behavior modification and intervention  Family tolerance/understanding  Mixing persons with aggressive behaviors can pose a risk to more passive, vulnerable roommates  Modifications in the environment tailored to challenging behavior

However…  Not a monolithic group  People learn from each other  One escalation or crisis can raise tension and anxiety leading to more  More pressure on staff  “Behavior Home” Labeling  Higher staffing ratios result in more people

Final Thought I’ve yet to see any problem, however complicated, which, when looked at at the right way did not become still more complicated. - Poul Anderson

Next Steps… How can we respond?