Notes from October 23, 2013:
The Future of Autism Adult Day Programs: Center-Based and Customized Solutions
Morgan Center adult clients
Place: University Club of Palo Alto, 3277 Miranda Ave, Palo Alto, CA 94304
[Directions: From Page Mill, turn east (sometimes known as south) on Foothill Expressway, Turn left on Hillview AvenuelMake an immediate left on Miranda Avenue (Miranda is an access road for Foothill Expressway). The club is the 3rd entrance on the right.]
Speakers included: Jennifer Sullivan, Morgan Autism Center; Tracey Carillo Fecher, director or former Autism Works program at Community Gatepath; Dana Hooper, LSA; Cathy Bouchard, Hope Services; Soheila Razban, Abilities United
Intro by Crisanta de Guzman, event co-chair
What will our ASD children do after high school? Regional Centers offer various day programs that provide behavioral, social, education, artistic and vocational activities that meet the needs of many. But what if our ASD children won’t fit into existing models? What options exist to create something different? We will need to provide programs for rapidly escalating numbers of ASD adults. Funding is a BIG problem.
Soheila Razban, director of adult services, Abilities United
abilitiesunited.org
Abilities United’s mission/vision is to advocate for the rights of all people with disabilities, that all people deserve lives that have meaning and value. Abilities United has a couple of job developers who are placing individuals in jobs now. Abilities United day services stress training in basic life and communication skills. Adult day programs and the community connect in various ways—through volunteer activities, and other integrated services. Abilities United is funded through and partners with Regional Centers (San Andreas, Golden Gate primarily). Abilities United has found that the best results for people on the spectrum come about when each plan is specific/individualized. Day services stress pre-vocational skills and independent living capabilities. The agency serves about 400 people in their homes and community settings. Participants work with community non-profit groups/agencies including food banks, and Ronald McDonald house. Participants run the Lytton Garden Bingo Program.
VIDEO: Clay's Coffee Service Delivery:
http://www.youtube.com/watch?v=yt07-I01HRc
VIDEO: Lytton Gardens Bingo Games:
http://www.youtube.com/watch?v=ng49Drj1Bx4
Tracey Carillo Fecher, director or former Autism Works program at Community Gatepath
gatepath.org
Community Gatepath focuses on providing programs and services specific to the goals of each individual. It has an Employment First focus (www.employmentfirst.net). Transitional Youth program focuses on building friendships between participants to motivate them to return. College Path works with 4 individuals at a time, supporting them to take classes, visit the college recreational centers and libraries.
Autism Works: Autism Works was a program created through a grant from the Department of Rehabilitation (DOR) in 2011. Each individual was assisted to identify his or her vocational, educational, and/or recreational interests. 16 young adults (ages 18-25) on the spectrum found their first jobs through this program. It included a pre-employment DOR-funded assessment to help identify any needed skill sets for each youth with ASD. Training paths were put in place for each individual. Emphasis was on employment social "soft skills" (i.e., greeting others, making eye-contact, employment interviews, etc.). Mock workstations were set-up to model real world sites. Group employment included landscaping, custodial, and minimum wage jobs. Non-Regional Center clients: Internships provided for supported employment. Tracey mentioned some of the challenges to individual employment: focus/attention (motivators are crucial), sensory sensitivities and preferred environments need to be taken into consideration. Autism Works has a 90% job retention rate to date. One SJ State graduate (on the spectrum) got a job at Entertainment Arts. Much work was needed to develop and maintain supported employment: 3279 targets, but 16 people placed in jobs. Autism Works provided online training for staff.
Recommendations: Vocational/day programs need to be tailored to the abilities of each client. Get ready for coming wave of youth on the spectrum: high school Individual Transition Plans can include training for pre-employment skills, create path to obtain jobs. Obtain vocational assessments, ongoing employer education, and job supports. Educate youth on the spectrum that self-disclosure is a good thing. It fosters understanding/acceptance; social behaviors can be different. Self-disclosure establishes a frame of reference for others. Job placement: entry-level positions are not always the best fit for youth on the spectrum. Other types of vocational opportunities are needed. Lack of funding is core issue.
Jennifer Sullivan, former Executive Director of Morgan Autism Center
morgancenter.org
Morgan Autism Center (MAC) provides a school program for youth and a day program for adults with ASD and related disorders. The Adult Program cannot be effective without comprehensive ongoing staff training. MAC trains staff in the Autism Learning Style. Jennifer stressed the need to understand the thought patterns of ASD individuals. Some tools used at MAC: Visual aids, positive behavioral modeling and consistent daily structure. MAC utilizes a large bulletin board with color-coded activities to orient clients throughout their day. People with ASD are reassured when they can see what's going to happen next. Daily routines are paired with pictures that hold special meaning for clients. Daily activities become intrinsically reinforcing, which allows for effortless learning.
Site-based Day Program: MAC clients go out into the community almost daily. There are groups that work at places like Hidden Villa, and participate in many types of volunteer work. MAC clients enjoy taking bunches of flowers out to community partners. MAC currently does not employ a job developer. They are looking into providing one soon. No typical paid work is possible for consumers at MAC. MAC obtained an Assistive Tech Specialist grant for $35k/yr. This allowed Jennifer to train her staff, who then trained MAC clients. Clients have a real sense of community. Most have been together for many years. Due to space and funding issues, MAC can't serve adult clients needing more than 3:1 ratios. MAC needs funding for a bigger facility to serve the surge of ASD young adults, and additional funding to serve those who need 1:1.
Dana Hooper, Life Services Alternatives (LSA), Inc. lsahomes.org
LSA operates 10 residential care homes (San Jose area). This agency continues to provide in-home day programs in 6 of those 10 homes (primarily geared to meet the needs of seniors). LSA recently opened their first adult day program, the Community Integration Training Program. This program can serve up to 15 individuals, but serves 4 now. CITP’s program design focuses on training individuals in community-based settings (San Jose, Campbell, and Santa Clara) and in assisting participants to find paid employment.
CITP origins: LSA had no experience running stand-alone day programs, so Dana started by visited programs currently operating, talking to vendors. Dana learned good things, partnered with agencies (Abilities United, etc.), and families, to try and understand where individual needs were not being met. Dana decided to build a small day program in order to gain experience and expertise. LSA partnered with San Andreas Regional Center to ensure a successful roll out. CITP is a completely independent day program, meaning an individual does not need to be in LSA residential care to attend. CITP provides 1:3 staffing ratios, and 1:1 if necessary. CITP program design includes: 1) Learning by doing: (i.e., participants prepare their lunches, cleanup after cooking, take public transportation, and learn skills that might be helpful to find/secure jobs). 2) Volunteer program: provides many activities each day. 3) Social and leisure activities. CITP main site is at West Hope Presbyterian Church in Saratoga. Dana said that he’s ready to open another program, but wants to talk to and partner with others to make sure it meets unmet needs.
Lessons Learned: Do your homework first. Once a program is open, getting information out about it can be very hard. It takes a while to build to program capacity. Also…it can be very difficult to coordinate all activities around licensing a facility. It takes some time, but it’s well worth it.
Cathy Bouchard, director of day services, Hope Services
hopeservices.org
Department of Rehabilitation: rehab.cahwnet.gov
Hope serves people with a wide range of Intellectual and Developmental Disabilities. Cathy highlighted Project Search, the unpaid internship program started in 2012 with Lucille Packard Children’s Hospital in coordination with the Department of Rehabilitation. Hope has not yet developed any ASD-specific programs. Cathy emphasized the importance of learning employment-specific social skills for people on the spectrum during their high school transition years (starting at age 13). Hope day services focus on skills training in functional communication, and relationship building. Hope BRIDGE program has a behavioral intervention focus. Functional assessments and 1:1, 1:2 or 1:3 staffing rations are offered. Hope can provide Tailored Day Services (8-10 hours/week: college, social circles, etc.)
Questions/Answers:
Commentary: Jill Escher, SFASA Housing and Lifespan Care Solutions Initiative chairperson (JE)
SFASA housing initiative, related workshops, and panel presentations provide discussion forums and critical information for our ASD community. Gathering community momentum, sharing information, and partnering together on new ventures is absolutely essential. We are now in the process of creating the "Mother of all e-mail lists" in an attempt to provide a platform on which ASD families can constructively work to fill the holes in the deficient ASD adult housing and services landscape.
Any state/federal funding realized through the Developmental Center (DC) closures will meet the needs of the DC leavers only. This reality continues to support a “two-tiered” system: one tier to deliver premier services to the individuals who have left the DC’s, and another tier to serve the rest of the system. The reality is the State has no commensurate plans to serve our population for the next 80+ years. Implicit assumption is that after the closure of the DC’s the State will not set aside funds to house or provide services to our booming ASD population. It has become our jobs to find programs and homes for our children. Real estate and staffing is needed, which requires financial resources.
Panel Response:
Cathy Bouchard (CB): Legislation is needed for this.
Jan Sullivan (JS): Programs need space to grow. Fund raising is on-going. Legislators need to be lobbied to write policies to support facilities and housing.
Jeff Darling (JD), resource department manager, San Andreas Regional Center (SARC): It’s all about increasing funding, which means better legislation. The Department of Developmental Services (DDS) sets all service rates. This includes: negotiated and median rates. Periodically (every 2 years) Statewide median rates are revised. We need more funding to allow for vendor growth and rate parity.
JE: Policy-making hasn’t shifted yet to address the new reality of the coming onslaught of youth on the spectrum.
Dana Hooper (DH), LSA and member of Developmental Center Task Force:
Many of system issues are understood, but have been placed in the background: the focus now is on how to close the existing DC's. The main goal of the Task Force is how to get resources built into the community. Outside of the DC closure processes (Community Placement Plans), there has never been money available to acquire homes. Vendor rates make it very difficult to self-fund. A very important role for our community is to invest in our own non-profits. Need to keep our agenda on the (legislative) table. Need to work in our own communities to direct our resources.
Q: Some people with ASD have challenges with both their cognitive and communication abilities. What can be done to provide services?
A: Sohelia Razban (SR): Hope (Cathy Bouchard) program can provide a 1:1 program to start (minimum: 10 hours/wk.). Some services are family-funded to provide 1:1 aides.
Jennifer Sullivan (JS): More severely ASD-challenged individuals do best with a specific plan per child. Develop program around child. ACC assessments needed (for non-verbal communicators). Behavioral challenges are typically communications-based. Some non-verbal children can communicate to get their needs met, some need assistance.
Tracey Fecher (TF): We need to organize to get more funding.
CB: Companies in California (as per recent legislation) are required to employ a certain percentage of our population. Iron Mountain (company) went to Hope, and hired 6 people.
Many providers can offer Community Integration Training. New Tailored Day Services are here, as per new legislation. Service funding is based on 80% of the cost of providing a full day program. The Tailored Day services allow for increased funding/hour (10-15 hours/week possible) and are individualized around the needs of your child. 1:1 staffing can be provided.
Discussion: SB 468- Self-Determination Program
This program will provide an alternative to the traditional way of providing Regional Center services to consumers (individuals with I/DD), with give clients more flexibility.
http://library.constantcontact.com/download/get/file/1101516639438-199/ASLA+FAQ%27s_SB_468+4-16-13.pdf
Q: I’m interested in learning what it might take for me to become vendored at San Andreas Regional Center. I want some control in the services provided to my 17 yr. old.
JD: Becoming a vendor of a Regional Center is certainly possible—but may not work for everyone. As a vendor, you need to comply with many regulations: Title 17, maybe Community Care Licensing…lots of compliance. It may be more work than you want to take on or need. Some type of hybrid program for your child might be possible using existing agencies.
Q: How can I proactively get my child on various day program lists? How can I find one that might work with my child?
JS: The best way to determine “best fit” is to visit programs. One option is to ask your Service Coordinator (SC) come with you. If that’s not practical, you could visit independently (and/or bring your child). If you like a particular program, you could call your SC to send out a referral packet.
Q: Where is a good place to find staff training?
JS: Parents Helping Parents has an AAC library and can provide information on how to access training for free. http://www.php.com
Q: Changing criteria: Day Programs are generally more vocationally-based. How do we address 1:1 services for our children if needed, due to the severity of their disability?
Scott Blow, district manager for adult unit at San Andreas Regional Center:
Basic problem is that the rate for 1:1 services is about $10/hr. It is hard to hire/train/keep 1:1 staff at rates that low.
JE: We just need to look at the hourly rates and wonder how do we find people/keep staff? There is a huge funding disconnect. We need to get organized so we can work together to get legislation to increase funding.
Anthony Rowe, director of operations at Greater Opportunities:
EMPLOYMENT: It’s a tall order to deliver jobs (meaningful work) to people with I\DD. Companies are getting basically free labor while in our participants are school. It’s not easy to convince companies to work with agencies in our system after an individual graduates. Business people already feel they are providing help through the workability programs at area high schools.
DAY PROGRAMING: Different agencies need to be assessed at as per what's happening in each group. One agency can offer many different programs. If you’ve seen one day program, you’ve seen one day program. Be prepared to visit several before you decide what’s best for your child/young adult.
Q: How do different agencies train staff?
DH: Staff training at CITP and every LSA program is important. LSA curriculum is good. We offer good online training classes. We want to make sure that the program is understood across all staff. Historically, long-term well-trained staffs assist with the behavioral plans for consumers.
CB: Tight budgets make it difficult to find the funds for training. Hope uses the online college of direct support. The best training for transition-aged children is to start during before high school. Parents need to start partnering earlier with Regional Center to access their communities while the child is still in school.
JS: We’ve found that MAC staffs feel empowered when they are trained to work with our ASD participants.
TF: Online training works, but it can be expensive. Webinars, other State-supported training might be more realistic.
SR: Vendors can take advantage of “friend agencies” to share knowledge. Start early. Get involved in helping your child identify what is meaningful for their life. Is that good enough for our family? Be creative. Find out what’s in the community…what’s happening? What can be applied for your child/family?
Q: There are some jobs offered through day programs. Is volunteering the only way to get them? What is the best way to work with day program for my child to invest the day? How can I learn more about this for my child?
CB: Schools have a greater freedom to access employment through the Workability programs. Minimum wages in the community don’t really affect our individuals.
Q: How can I access something less than 30 hours/week of day programming for my child?
CB: Best choice at this point: Tailored Day Services.
DH: Tailored Day Services do not require participants to attend 5 days/week.
Q: Can job coaching be continued if needed?
A (unidentified responder): Supported Employment provides job coaching through Department of Rehabilitation, but DOR isn’t funded adequately for this service. They start losing money providing this service on the eve of placement. Once an individual is in a job for about 3 months, job coaching services move to RC funding.
DH: My son is able to work with staff because of he is in supported living 24/7. Not an official job program, but they provide very valuable service.
Q: How financially robust are Regional Center agencies/Programs (how are vendors set-up to weather various financial crises)?
JS: MAC has a reserve operational fund that could last for about 6 months. MAC dosen’t tap into it often.
DH: Vendor rates are the BIG problem. Rates just got back to where they were about 10 years ago (inflation not accounted for). Most providers are in tight situations. If another downturn in our economy happens, they do not have much left in their reserves. Most providers grow by investing. The cost of starting a new program is high. They should have 3-9 months in reserves for "fronting" expenses. Our system can’t stand another 10 years of increasing costs with no rate increase. Vendors can’t retain valued staff. The evil of inflation needs to be matched with budgets.
JE: Reminder: We have upcoming Nov. 6th panel on Parent-Directed Services. On Jan 29th we will be making efforts to identify our legislative priorities. We have lots to talk about. All must attend.
(Notes taken by Cathy McCoy, Housing Initiative volunteer)
[Directions: From Page Mill, turn east (sometimes known as south) on Foothill Expressway, Turn left on Hillview AvenuelMake an immediate left on Miranda Avenue (Miranda is an access road for Foothill Expressway). The club is the 3rd entrance on the right.]
Speakers included: Jennifer Sullivan, Morgan Autism Center; Tracey Carillo Fecher, director or former Autism Works program at Community Gatepath; Dana Hooper, LSA; Cathy Bouchard, Hope Services; Soheila Razban, Abilities United
Intro by Crisanta de Guzman, event co-chair
What will our ASD children do after high school? Regional Centers offer various day programs that provide behavioral, social, education, artistic and vocational activities that meet the needs of many. But what if our ASD children won’t fit into existing models? What options exist to create something different? We will need to provide programs for rapidly escalating numbers of ASD adults. Funding is a BIG problem.
Soheila Razban, director of adult services, Abilities United
abilitiesunited.org
Abilities United’s mission/vision is to advocate for the rights of all people with disabilities, that all people deserve lives that have meaning and value. Abilities United has a couple of job developers who are placing individuals in jobs now. Abilities United day services stress training in basic life and communication skills. Adult day programs and the community connect in various ways—through volunteer activities, and other integrated services. Abilities United is funded through and partners with Regional Centers (San Andreas, Golden Gate primarily). Abilities United has found that the best results for people on the spectrum come about when each plan is specific/individualized. Day services stress pre-vocational skills and independent living capabilities. The agency serves about 400 people in their homes and community settings. Participants work with community non-profit groups/agencies including food banks, and Ronald McDonald house. Participants run the Lytton Garden Bingo Program.
VIDEO: Clay's Coffee Service Delivery:
http://www.youtube.com/watch?v=yt07-I01HRc
VIDEO: Lytton Gardens Bingo Games:
http://www.youtube.com/watch?v=ng49Drj1Bx4
Tracey Carillo Fecher, director or former Autism Works program at Community Gatepath
gatepath.org
Community Gatepath focuses on providing programs and services specific to the goals of each individual. It has an Employment First focus (www.employmentfirst.net). Transitional Youth program focuses on building friendships between participants to motivate them to return. College Path works with 4 individuals at a time, supporting them to take classes, visit the college recreational centers and libraries.
Autism Works: Autism Works was a program created through a grant from the Department of Rehabilitation (DOR) in 2011. Each individual was assisted to identify his or her vocational, educational, and/or recreational interests. 16 young adults (ages 18-25) on the spectrum found their first jobs through this program. It included a pre-employment DOR-funded assessment to help identify any needed skill sets for each youth with ASD. Training paths were put in place for each individual. Emphasis was on employment social "soft skills" (i.e., greeting others, making eye-contact, employment interviews, etc.). Mock workstations were set-up to model real world sites. Group employment included landscaping, custodial, and minimum wage jobs. Non-Regional Center clients: Internships provided for supported employment. Tracey mentioned some of the challenges to individual employment: focus/attention (motivators are crucial), sensory sensitivities and preferred environments need to be taken into consideration. Autism Works has a 90% job retention rate to date. One SJ State graduate (on the spectrum) got a job at Entertainment Arts. Much work was needed to develop and maintain supported employment: 3279 targets, but 16 people placed in jobs. Autism Works provided online training for staff.
Recommendations: Vocational/day programs need to be tailored to the abilities of each client. Get ready for coming wave of youth on the spectrum: high school Individual Transition Plans can include training for pre-employment skills, create path to obtain jobs. Obtain vocational assessments, ongoing employer education, and job supports. Educate youth on the spectrum that self-disclosure is a good thing. It fosters understanding/acceptance; social behaviors can be different. Self-disclosure establishes a frame of reference for others. Job placement: entry-level positions are not always the best fit for youth on the spectrum. Other types of vocational opportunities are needed. Lack of funding is core issue.
Jennifer Sullivan, former Executive Director of Morgan Autism Center
morgancenter.org
Morgan Autism Center (MAC) provides a school program for youth and a day program for adults with ASD and related disorders. The Adult Program cannot be effective without comprehensive ongoing staff training. MAC trains staff in the Autism Learning Style. Jennifer stressed the need to understand the thought patterns of ASD individuals. Some tools used at MAC: Visual aids, positive behavioral modeling and consistent daily structure. MAC utilizes a large bulletin board with color-coded activities to orient clients throughout their day. People with ASD are reassured when they can see what's going to happen next. Daily routines are paired with pictures that hold special meaning for clients. Daily activities become intrinsically reinforcing, which allows for effortless learning.
Site-based Day Program: MAC clients go out into the community almost daily. There are groups that work at places like Hidden Villa, and participate in many types of volunteer work. MAC clients enjoy taking bunches of flowers out to community partners. MAC currently does not employ a job developer. They are looking into providing one soon. No typical paid work is possible for consumers at MAC. MAC obtained an Assistive Tech Specialist grant for $35k/yr. This allowed Jennifer to train her staff, who then trained MAC clients. Clients have a real sense of community. Most have been together for many years. Due to space and funding issues, MAC can't serve adult clients needing more than 3:1 ratios. MAC needs funding for a bigger facility to serve the surge of ASD young adults, and additional funding to serve those who need 1:1.
Dana Hooper, Life Services Alternatives (LSA), Inc. lsahomes.org
LSA operates 10 residential care homes (San Jose area). This agency continues to provide in-home day programs in 6 of those 10 homes (primarily geared to meet the needs of seniors). LSA recently opened their first adult day program, the Community Integration Training Program. This program can serve up to 15 individuals, but serves 4 now. CITP’s program design focuses on training individuals in community-based settings (San Jose, Campbell, and Santa Clara) and in assisting participants to find paid employment.
CITP origins: LSA had no experience running stand-alone day programs, so Dana started by visited programs currently operating, talking to vendors. Dana learned good things, partnered with agencies (Abilities United, etc.), and families, to try and understand where individual needs were not being met. Dana decided to build a small day program in order to gain experience and expertise. LSA partnered with San Andreas Regional Center to ensure a successful roll out. CITP is a completely independent day program, meaning an individual does not need to be in LSA residential care to attend. CITP provides 1:3 staffing ratios, and 1:1 if necessary. CITP program design includes: 1) Learning by doing: (i.e., participants prepare their lunches, cleanup after cooking, take public transportation, and learn skills that might be helpful to find/secure jobs). 2) Volunteer program: provides many activities each day. 3) Social and leisure activities. CITP main site is at West Hope Presbyterian Church in Saratoga. Dana said that he’s ready to open another program, but wants to talk to and partner with others to make sure it meets unmet needs.
Lessons Learned: Do your homework first. Once a program is open, getting information out about it can be very hard. It takes a while to build to program capacity. Also…it can be very difficult to coordinate all activities around licensing a facility. It takes some time, but it’s well worth it.
Cathy Bouchard, director of day services, Hope Services
hopeservices.org
Department of Rehabilitation: rehab.cahwnet.gov
Hope serves people with a wide range of Intellectual and Developmental Disabilities. Cathy highlighted Project Search, the unpaid internship program started in 2012 with Lucille Packard Children’s Hospital in coordination with the Department of Rehabilitation. Hope has not yet developed any ASD-specific programs. Cathy emphasized the importance of learning employment-specific social skills for people on the spectrum during their high school transition years (starting at age 13). Hope day services focus on skills training in functional communication, and relationship building. Hope BRIDGE program has a behavioral intervention focus. Functional assessments and 1:1, 1:2 or 1:3 staffing rations are offered. Hope can provide Tailored Day Services (8-10 hours/week: college, social circles, etc.)
Questions/Answers:
Commentary: Jill Escher, SFASA Housing and Lifespan Care Solutions Initiative chairperson (JE)
SFASA housing initiative, related workshops, and panel presentations provide discussion forums and critical information for our ASD community. Gathering community momentum, sharing information, and partnering together on new ventures is absolutely essential. We are now in the process of creating the "Mother of all e-mail lists" in an attempt to provide a platform on which ASD families can constructively work to fill the holes in the deficient ASD adult housing and services landscape.
Any state/federal funding realized through the Developmental Center (DC) closures will meet the needs of the DC leavers only. This reality continues to support a “two-tiered” system: one tier to deliver premier services to the individuals who have left the DC’s, and another tier to serve the rest of the system. The reality is the State has no commensurate plans to serve our population for the next 80+ years. Implicit assumption is that after the closure of the DC’s the State will not set aside funds to house or provide services to our booming ASD population. It has become our jobs to find programs and homes for our children. Real estate and staffing is needed, which requires financial resources.
Panel Response:
Cathy Bouchard (CB): Legislation is needed for this.
Jan Sullivan (JS): Programs need space to grow. Fund raising is on-going. Legislators need to be lobbied to write policies to support facilities and housing.
Jeff Darling (JD), resource department manager, San Andreas Regional Center (SARC): It’s all about increasing funding, which means better legislation. The Department of Developmental Services (DDS) sets all service rates. This includes: negotiated and median rates. Periodically (every 2 years) Statewide median rates are revised. We need more funding to allow for vendor growth and rate parity.
JE: Policy-making hasn’t shifted yet to address the new reality of the coming onslaught of youth on the spectrum.
Dana Hooper (DH), LSA and member of Developmental Center Task Force:
Many of system issues are understood, but have been placed in the background: the focus now is on how to close the existing DC's. The main goal of the Task Force is how to get resources built into the community. Outside of the DC closure processes (Community Placement Plans), there has never been money available to acquire homes. Vendor rates make it very difficult to self-fund. A very important role for our community is to invest in our own non-profits. Need to keep our agenda on the (legislative) table. Need to work in our own communities to direct our resources.
Q: Some people with ASD have challenges with both their cognitive and communication abilities. What can be done to provide services?
A: Sohelia Razban (SR): Hope (Cathy Bouchard) program can provide a 1:1 program to start (minimum: 10 hours/wk.). Some services are family-funded to provide 1:1 aides.
Jennifer Sullivan (JS): More severely ASD-challenged individuals do best with a specific plan per child. Develop program around child. ACC assessments needed (for non-verbal communicators). Behavioral challenges are typically communications-based. Some non-verbal children can communicate to get their needs met, some need assistance.
Tracey Fecher (TF): We need to organize to get more funding.
CB: Companies in California (as per recent legislation) are required to employ a certain percentage of our population. Iron Mountain (company) went to Hope, and hired 6 people.
Many providers can offer Community Integration Training. New Tailored Day Services are here, as per new legislation. Service funding is based on 80% of the cost of providing a full day program. The Tailored Day services allow for increased funding/hour (10-15 hours/week possible) and are individualized around the needs of your child. 1:1 staffing can be provided.
Discussion: SB 468- Self-Determination Program
This program will provide an alternative to the traditional way of providing Regional Center services to consumers (individuals with I/DD), with give clients more flexibility.
http://library.constantcontact.com/download/get/file/1101516639438-199/ASLA+FAQ%27s_SB_468+4-16-13.pdf
Q: I’m interested in learning what it might take for me to become vendored at San Andreas Regional Center. I want some control in the services provided to my 17 yr. old.
JD: Becoming a vendor of a Regional Center is certainly possible—but may not work for everyone. As a vendor, you need to comply with many regulations: Title 17, maybe Community Care Licensing…lots of compliance. It may be more work than you want to take on or need. Some type of hybrid program for your child might be possible using existing agencies.
Q: How can I proactively get my child on various day program lists? How can I find one that might work with my child?
JS: The best way to determine “best fit” is to visit programs. One option is to ask your Service Coordinator (SC) come with you. If that’s not practical, you could visit independently (and/or bring your child). If you like a particular program, you could call your SC to send out a referral packet.
Q: Where is a good place to find staff training?
JS: Parents Helping Parents has an AAC library and can provide information on how to access training for free. http://www.php.com
Q: Changing criteria: Day Programs are generally more vocationally-based. How do we address 1:1 services for our children if needed, due to the severity of their disability?
Scott Blow, district manager for adult unit at San Andreas Regional Center:
Basic problem is that the rate for 1:1 services is about $10/hr. It is hard to hire/train/keep 1:1 staff at rates that low.
JE: We just need to look at the hourly rates and wonder how do we find people/keep staff? There is a huge funding disconnect. We need to get organized so we can work together to get legislation to increase funding.
Anthony Rowe, director of operations at Greater Opportunities:
EMPLOYMENT: It’s a tall order to deliver jobs (meaningful work) to people with I\DD. Companies are getting basically free labor while in our participants are school. It’s not easy to convince companies to work with agencies in our system after an individual graduates. Business people already feel they are providing help through the workability programs at area high schools.
DAY PROGRAMING: Different agencies need to be assessed at as per what's happening in each group. One agency can offer many different programs. If you’ve seen one day program, you’ve seen one day program. Be prepared to visit several before you decide what’s best for your child/young adult.
Q: How do different agencies train staff?
DH: Staff training at CITP and every LSA program is important. LSA curriculum is good. We offer good online training classes. We want to make sure that the program is understood across all staff. Historically, long-term well-trained staffs assist with the behavioral plans for consumers.
CB: Tight budgets make it difficult to find the funds for training. Hope uses the online college of direct support. The best training for transition-aged children is to start during before high school. Parents need to start partnering earlier with Regional Center to access their communities while the child is still in school.
JS: We’ve found that MAC staffs feel empowered when they are trained to work with our ASD participants.
TF: Online training works, but it can be expensive. Webinars, other State-supported training might be more realistic.
SR: Vendors can take advantage of “friend agencies” to share knowledge. Start early. Get involved in helping your child identify what is meaningful for their life. Is that good enough for our family? Be creative. Find out what’s in the community…what’s happening? What can be applied for your child/family?
Q: There are some jobs offered through day programs. Is volunteering the only way to get them? What is the best way to work with day program for my child to invest the day? How can I learn more about this for my child?
CB: Schools have a greater freedom to access employment through the Workability programs. Minimum wages in the community don’t really affect our individuals.
Q: How can I access something less than 30 hours/week of day programming for my child?
CB: Best choice at this point: Tailored Day Services.
DH: Tailored Day Services do not require participants to attend 5 days/week.
Q: Can job coaching be continued if needed?
A (unidentified responder): Supported Employment provides job coaching through Department of Rehabilitation, but DOR isn’t funded adequately for this service. They start losing money providing this service on the eve of placement. Once an individual is in a job for about 3 months, job coaching services move to RC funding.
DH: My son is able to work with staff because of he is in supported living 24/7. Not an official job program, but they provide very valuable service.
Q: How financially robust are Regional Center agencies/Programs (how are vendors set-up to weather various financial crises)?
JS: MAC has a reserve operational fund that could last for about 6 months. MAC dosen’t tap into it often.
DH: Vendor rates are the BIG problem. Rates just got back to where they were about 10 years ago (inflation not accounted for). Most providers are in tight situations. If another downturn in our economy happens, they do not have much left in their reserves. Most providers grow by investing. The cost of starting a new program is high. They should have 3-9 months in reserves for "fronting" expenses. Our system can’t stand another 10 years of increasing costs with no rate increase. Vendors can’t retain valued staff. The evil of inflation needs to be matched with budgets.
JE: Reminder: We have upcoming Nov. 6th panel on Parent-Directed Services. On Jan 29th we will be making efforts to identify our legislative priorities. We have lots to talk about. All must attend.
(Notes taken by Cathy McCoy, Housing Initiative volunteer)