May 29, 2013: Adult Housing and Lifespan Care Solutions Summit: Summary Notes
Held at the University Club of Palo Alto
Intro by Connie Boyar Frenzel and Jill Escher, Autism Society, SF Bay Area
sfautismsociety.org
The Autism Society of the SF Bay Area is launching a multi-year initiative of education, advocacy and networking to catalyze the formation of new adult housing and day programs to serve the exploding population of ASD adults. Funding must be radically increased to support choice and build options: in next 12 years, there will be an estimated $10 billion of additional need in California alone. We have much to plan, and accomplish.
Marianne Sullivan, Autism Speaks
autismspeaks.org
Autism Speaks distributed a flash drive containing all their toolkits, including the Housing and Residential Supports Toolkit. AS is holding a national market survey online regarding housing for the ASD population, launching mid-June. They are hoping for about 10,000 parents to participate. AS is also offering grants to local service providers, Marianne encouraged local nonprofits to apply.
Dana Hooper, Life Services Alternatives (LSA), Inc.
lsahomes.org
Dana, a former tech exec and father of a 36 year-old son with a developmental disability, is the executive director of LSA, which operates nine residential care facilities and six day programs. LSA continues to assess how they can offer choices that meet the needs of the growing ASD population. LSA operates homes for the medically fragile and also just opened the Cypress Home for five higher functioning 20 to 30-year-old men. It uses an Independent Living service-training model that “encourages residents to make their own choices and direct their own lives.”
Santi Rogers, Executive Director, San Andreas Regional Center
sarc.org
Santi said that the numbers of people with Autism are growing faster than any other Regional Center population, with no end in sight. (“Consumer Population” sheet for current data—SARC handout). Adequate services specific to the needs of this expanding population as they age (acknowledging that life spans are getting longer) have yet to be developed. Now is the right time to start this conversation. Santi stressed the importance of the Lanterman Act civil rights legislation (http://www.dds.ca.gov/statutes/statutes_home.cfm). Its basic tenet: People with Intellectual/Developmentally Disabilities (I/DD) belong in their neighborhood communities, not living in state-run institutions. Regional Centers were created to provide services in communities to people with Mental Retardation (MR), Cerebral Palsy (CP), Autism, Epilepsy, and a Fifth Category (disabling conditions closely related to MR, or requiring similar treatment). Regional Centers are mandated to support community inclusion through person-centered planning. Santi estimated that 75 to 80% of individuals assessed through the San Andreas intake department are now eligible for Regional Center services. The Department of Developmental Service (DDS) budget is now approaching $5B/yr. Over the past six years, funding for developmental services has been systematically dismantled with decreases of over $1.3b. State Budget Subcommittees (Senate/Assembly) met over the course of the first part of this year and have now made their recommendations to the Budget Committee for the 2013-14 budget. The Majority party rules (Democrats, this year). Governor Brown understated his budget this year to hold on to a “prudent reserve.” Serious discourse will take place now by Budget Committee, with millions of dollars at stake. DDS may be given funding increases for specific programs – Santi is not sure which will be identified. Senator Steinberg‘s bill (SB 126: extending dates for autism insurance reform) still in play…
Most components protected by DDS: Live: wholesome place to live. Live in a natural home. Work: major aspect of good life – opportunity and access. Relationships – long-term and short term.
Supporting Adult ASD Children Living with Parents
Connie Boyar Frenzel, Autism Society SF Bay Area
Connie has 26-year-old adult son with autism who utilizes Supported Living services. Her son now lives in Milpitas, and goes home to Connie on weekends.
See Resource List (hand out): Connie recommended all parents acquire this book: Rights Under the Lanterman Act, http://www.disabilityrightsca.org/pubs/506301.pdf. Call Disability Rights California at 800.776.5746 to obtain a copy.
Various resources to support your child living at home:
Medicaid waiver: “Institutional Deeming” (child income separated from parental income) – e.g., will pay for co-pays, more case management (home health aides), transportation, etc. Can include In Home Support Services (IHSS). A county social worker will come out to evaluate need. You can either hire a provider or be the provider of IHSS hours yourself. Check into obtaining “protective supervision” for your adult child. More IHSS hours may be granted in that case. Governor is working hard to chip this service away. IHSS reimbursement amount varies depending on where you live/county. Direct Service Provider (DSP) training can increase the hourly rate for your providers if your young adult lives at home.
Day programs: Not always a great fit for people on the spectrum, as most were not designed for people with autism. Get a list (more than 1) from your child’s Service Coordinator. Visit them before deciding.
Supplemental Security Income (SSI): http://www.ssa.gov/pgm/ssi.htm May get denied the first time around. Check out NOLO press book. \
Behavioral modification/consultants; Adaptive skills training
Emergency crisis response teams
Supported employment (including job coaching)
Independent Living Skills (ILS) training
Supported Living Services (SLS)
Adult Day Programs
Jennifer Sullivan, executive director, Morgan Autism Center
morgancenter.org
There is a dramatic need for more adult day programs that serve ASD clients, and more funding for such programs. In addition, we need continuing care after parents die or become disabled, and coordination with housing component.
In 1985 (when MAC began), very few programs were designed for people with autism. Morgan Autism Center was designed specifically to address how individuals on the spectrum think and learn. People with other developmental disabilities can attend/benefit from to MAC (or any other autism-designed programs), but not the other way around.
Day programs require: 1) Adequate and consistent staff training. Staff needs to be trained to deal with challenging behaviors. Clients and staff will get frustrated if day program is not designed well with training provided. There can be tremendous staff burnout. If staff feels confident in what they are doing, they will want to stay. 2) Specifically designed programs are needed to address the varied learning styles of the ASD population, and 3) Adequate funding is needed (pay for staff is currently “terrible”).
Staff/participant ratio is a concern: The Morgan Autism Center adult program has a 3-1 ratio and operates in a group setting, but many ASD adults can have a hard time interacting in group settings and have behaviors and limitations that require more intensive supervision. MAC tries to have 1-1 transitional support, but this is not always possible (funding, staff issues). Space is a problem at current location: MAC doesn’t have the space to support/serve those children with significant behavioral issues. Very hard for MAC to not be able to support those individuals, especially when those adults grew up at the program. MAC wants to try to create a behavioral program, but the rates for programs need to increase.
Comment by Santi Rogers: The Department of Developmental Services can increase day program rates one program at a time. ‘Health and safety’ exceptions are approved minimally. The reality is: funding for the Department has been frozen in place since 2008-2009, but could be improving soon. Rates are undervalued now. We are competing with education for the same funding.
Group Homes
Kurt Ohlfs, executive director, Pacific Autism Center for Education
pacificautism.org
Typical residential home in a neighborhood with 3 to 6 residents. Residential Care Facilities are organized according to an individual’s need for care: Level 2 (less need), 3 and 4 (most need), organized according to acuity (A-I). Ask your Regional Center Service Coordinator for details.
New models include (from Agnews closure):
Family Teaching Model: Family Home Agency: http://www.dds.ca.gov/LivingArrang/FHA.cfm
Adult Residential Facility for Persons with Special Health Care Needs: SB 962’s: http://www.dds.ca.gov/LivingArrang/962Homes.cfm
SLS hybrid models.
Analysis of group home business model:
SWOT (Strengths, Weaknesses, Opportunities, and Threats):
Strengths: Greater financial security with running more homes, larger homes. Increased number of staff pool.
Weaknesses: State pays flat median rate for cost of care. Cost of living in expensive area can make group home business model unsustainable. Pool of potential staff/caregivers limited to low pay in high cost area. Minimum wage in San Jose went up to $10/hr., and DDS has yet to accommodate. It’s costing more to keep caregivers insured (about 13 cents/dollar).
Opportunities: Housing costs lower in Dublin area.
Threats: Long-term viability. Many group homes are operated for profit, with the residential owner’s retirement built into equity of the home. When home is sold, residents often move.
Current group home living model does not guarantee long-term stability for housing adult children. May not answer the question: “Where is my child going to live when I die?”
Independent Living Services, Supported Living Services, and Co-ops
Jan Stokley, executive director, Housing Choices Coalition (HCC)
housingchoices.com
HCC was founded by a group of parents to develop housing opportunities for DD adults. HCC is funded by SARC to help consumers gain access to set-aside affordable housing. HCC works to find/support affordable housing with low-cost units. HCC helps people apply for housing in the larger community. SARC (vs. other RC’s) has gone the farthest to make these set-asides happen. There is overt discrimination—some built right into the process (e.g., low income housing is looking for profile that most of our young people won’t have: good credit report, etc.) Greatest success for our population is with the set-aside units.
Networked in the Bay Area, HCC has some of the best affordable housing developers in the area. HCC is developing high quality green housing with affordable rents—professionally managed and sustained. Dedicated wait-list for particular units in the housing complex. Rents are affordable—even without a section 8 voucher. Consumer can choose ILS or SLS and change provider without affecting their housing. Also, if new housing opportunity becomes available, individual can keep current support services. HCC focus is on properties near transportation etc.
When is Housing Affordable?
Best Case: Individual has Sec. 8 Housing Voucher and pays only 30% of household income for rent.
Next Best Case: Individual gains access to a property with voucher subsidy attached to the unit, so rent equals only 30% of the actual household income ($270 if income is $900/month) More Frequently: Rent is set to be affordable to a household earning a specific percent of the Area Median Income.
Housing Cooperatives: An independent living alternative to the group home, with an affordable rent (about $350/month): Funded by SARC to assess needs/goals/plans of perspective residents. Long wait lists for available apartments. 4 or 5 people share a single-family home. Housing coalition – 20 hours/week of on-site support by HCC for the housing community. Owned by HOPE (agency), leased to HCC. Residents choose their own ILS or SLS – support service is tailored to each individual’s need and is independent of housing choice.
Independent Living Skills (ILS) & Supported Living Services (SLS)
ILS: funded by Regional Center—train, teach, coach and monitor a person in basics of daily living. Model is teaching and coaching, mainly for higher functioning individuals.
SLS: funded by Regional Center—for more significant support. Staff working with the young person is going to provide care for them, rather than teach, facilitate and coach. If 24x7 required, this could include a Day Program plus a live-in SLS person who helps with activities of daily life. May require monitoring overnight. If live-in staff is required, that might mean a larger housing setup (e.g., more bedrooms).
Intentional Communities
Mark Jackson – Atlas Living, Sweetwater Spectrum
sweetwaterspectrum.org
Mark has a 21-year-old ASD son. Mark believes in creating “intentional communities” (his inclusive term for the Sweetwater housing model). Sweetwater Spectrum Community (Established in 2006) is a community within a community in downtown Sonoma, CA. Four four-bedroom homes for 16 residents that offer supported living with a variety of activities in common buildings across beautiful grounds filled with gardens, a pool and trees.
Mark stated that many young adults still live at home with parents, which can cause a “perfect storm” (due in part to need for many [can be 4 or more] caregivers per day: 24/7). Current trend is to separate ownership of housing from the provision of support service. Waiting for help from Regional Center can be frustrating. Service coordinator caseloads average 80 to 90 individuals; workloads impacted, housing options limited.
Mark referred to two specific pieces of legislation:
1) Olmstead Decision (1999): supported the rights of people with disabilities to live in community integrated housing: http://www.ada.gov/olmstead/olmstead_about.htm.
2) SB 812 (2012): requires cites and counties to include an analysis of the housing needs of the developmentally disabled in the analysis of special housing needs in their housing elements.
http://www.hcd.ca.gov/hpd/NoticeCoverLttrSB812.pdf
Due to funding freeze (in part Sequester driven), housing subsidies for our I/DD population are now more infrequently granted, resulting in very few “move outs” for young adults. Developmental Center placements are winding down. Our current housing options include: “Group Homes” – Mark is pessimistic about these, due to current and continued anticipated lack of adequate funding to support model. Group home residents can be more segregated. Supported Living Services: SLS – many individuals served in their family home or in community through this support model. Sustainability of these models a problem due to economies of scale.
Intentional community benefits:
Economies of scale works for activities and programs
Designed for adults on the autism spectrum
Some residents participate in ILS, others SLS
Residents go into the community regularly
Support network for other families
Ownership options
Attractive environment for volunteers/staff: larger group of staff supporting each other, onsite management
Process:
Create the vision
Raise funds
Site identification/feasibility studies
Services are provided on site: some funded by RC.
Site improvement and construction
Program, staff and resident coordination
Mark’s Advice:
Not a part-time project to envision and develop such a community. Don’t go it alone – find partners and appropriate professional help. Make sure residents will be integrated in the community: be patient to find the right location. Services and programs are as important as housing. Engage your local politicians and community. Remember – you cannot serve everyone. Tell your story from the heart to the local government and to your community/neighbors.
Anna Wang, Friends of Children with Special Needs (FCSN)
fcsn1996.org
FCSN’s mission is to help individuals with special needs and their families to find love, hope, respect, and support through integrated community involvement.
Anna stated that housing is one piece of the story. FCSN wants to “Build a brighter future for the special needs community”. They strive to provide peace of mind to families, and happiness for our children. Integrated Community Involvement: Live-Work-Play [play: e.g., lots of field trips!]. FCSN wants to turn “mortality planning” worries into positive action: The Village is the name of their Center. FCSN provides comprehensive ILS/SLS support programs, and several only Day Programs, included in nearby housing in the community.
Anna said that 26 families – bought land in cash; donated half to FCSN. Created LLC. It used no government funding. FCSN has grown significantly: 2006 Fremont Center, 2008 San Jose Satellite Center. Over 40 programs in the Bay Area now. FCSN has about 50 adults with disabilities in programs. Adult Day Programs: (a) Center-Based, and (b) Community-Based. 10-unit complex with 4 Bedrooms/unit privately owned by FCSN parents. 24/7 residents share chores around house. SLS supports those living in nearby apartments. Vendored by RC for both SLS and ILS.
Dream Project #2: Meaningful Employment: FCSN parents are working to create a comprehensive and support a plan so their adult children can have their own place of employment. This model will provide job security, happiness and satisfaction. Parents explore the talent and abilities of the participants. They then plan a business around them. It has been shown that employment for our population improves self-esteem while providing rewards and incentives.
Susan Houghton, Sunflower Hill: A Sustainable Special Needs Community
sunflowerhill.org
Sunflower Hill began with the dream of parents for their children with special needs to grow and live a community that can provide activities, security, dining options and social experiences to can sustain and enhance them for their entire lives. It’s based out of the Alameda/Contra Costa area. Parents bring various expertise and different backgrounds. 50 families in the Tri-Valley area now looking in Dublin to develop a community. There needs to be an advocacy conversation and a new funding model.
Looked at Other Examples:
1) Vine Village – a group home
2) Farms and Ranches Enabling people with Disabilities (FRED): http://www.fredconference.myevent.com
3) Golden Heart Ranch (FRED) – private pay of $4k per month
4) Bittersweet Farms:
http://www.bittersweetfarms.org/
QUESTIONS/ANSWERS:
Protecting our children from abuse, how is this done?
(JanS): Protect your child while you can still be involved, while you still have the time. Make sure there are multiple people involved in your children’s lives. Need to ensure that the responsibility for caring for your child isn’t too focused on one group.
(MJ): More eyes on staff, NO abuse is acceptable. Keep open dialogue. Have a whistleblower policy.
(KO): Whistleblower policy not always possible due to close relationships between staffs. Agencies must be transparent—someone must always be available to answer questions. Careful monitoring of financials and programming accountability (auditing) needed. You need to trust your own instincts. Watch for changes in behavioral patterns of individual (child/staff). Have a clear conversation with the agency you are working with. Abuse can involve physical and emotional/social. PACE has clearance to use cameras and listening devices in their homes.
(CBF): for ILS, child can be more isolated, so it is important to have case manager for the staff to look closely at the financial records. Is the money being used wisely? Are they eating nutritionally good diets? Training is really important. Drop in unexpectedly to identify a problem. Random sampling. Oversight must be built-in. But if you check-in too much, you can lose staff. Feeling of lack of trust = loss.
What can parents do to increase program options?
(JenniferS): Talk to Regional Center, advocate for new programming with trained staff. Training is critical. If not done well, can lead to opportunities for abuse. Need to advocate for more funding, especially when a greater than a 3:1 ratio is needed.
(CBF): Legislative changes are needed to support new day program models.
Project based housing
(JE): Project-basing through the Housing Authority can confer instant Section 8 voucher eligibility, but we need more projects (which could be investment-based or nonprofit. This is “almost free” housing using federal money.
(CBF): Need to look at task forces, bring people together to talk about this. Get each community to talk. Set-aside units: people can apply to get on wait lists. Affordable housing is a very sparse commodity.
(JanS) Lottery: Federal funding, but with HUD money, may not have ability to use for our children. When a new project comes on line, people can apply in initial lottery, then a waitlist. Must take these steps to be fair – and they want to be fair. Process must be transparent.
(AW): FCSN did not take outside (federal) funding. Parents/others that invested could own property/utilize for their children. Can rent out property for just $500 a month until the owner chooses the right to occupy. Three of her friends went into buying a house or condo, and still receive right to occupy.
Could an adult child be supported in his/her own home? What if needs include some type of 24/7 care?
(JanS): Yes. An individual could use either ILS or SLS support services across most housing models.
Housing Co-op model work if 4-5 families purchase home together?
(JanS) Yes.
(MJ): Yes, currently all have ILS, not SLS, but feasible. Staff member needed to have his/her bedroom. Could protect two bedrooms for the long-term to take on SLS support. Must protect the extra bedrooms to accept the next person who needs the SLS.
(SR) Regarding planned communities, have caution they do not turn into institutions. Separate home ownership from the day program – this can help.
What causes denial of SSI claims at age 18?
(CBF): Denial is almost routine. Tenacity gets outcomes. Keep at it!
How can adult children live in the family home after the death of their parents?
(JS): If your child is living with you, and you’d like him/her to live there after you are gone, you can place your home in trust and rely on non-profit organization with fiduciary capacity to own and run the home. See North Bay Housing Coalitions website (per MJ and SJR). http://northbayhousing.webs.com/
(JanS): Consortiums can work; business plans can work. Execution over time, driven by the needs of the individual served can be a good business plan. Certain areas have a better potential for ownership. Separate ownership from service. This is feasible.
(CBF): Make sure that any trust isn’t going to ultimately owe Medicaid payback.
Has regulatory oversight kept pace with the autism numbers?
(SJR): The current legislative leadership group is all from our districts. Public policy is open for discussion. Other bills can be discussed between sessions. Protection for our population has always been a big problem. Laws already exists…mandated reporters need to act.
Intro by Connie Boyar Frenzel and Jill Escher, Autism Society, SF Bay Area
sfautismsociety.org
The Autism Society of the SF Bay Area is launching a multi-year initiative of education, advocacy and networking to catalyze the formation of new adult housing and day programs to serve the exploding population of ASD adults. Funding must be radically increased to support choice and build options: in next 12 years, there will be an estimated $10 billion of additional need in California alone. We have much to plan, and accomplish.
Marianne Sullivan, Autism Speaks
autismspeaks.org
Autism Speaks distributed a flash drive containing all their toolkits, including the Housing and Residential Supports Toolkit. AS is holding a national market survey online regarding housing for the ASD population, launching mid-June. They are hoping for about 10,000 parents to participate. AS is also offering grants to local service providers, Marianne encouraged local nonprofits to apply.
Dana Hooper, Life Services Alternatives (LSA), Inc.
lsahomes.org
Dana, a former tech exec and father of a 36 year-old son with a developmental disability, is the executive director of LSA, which operates nine residential care facilities and six day programs. LSA continues to assess how they can offer choices that meet the needs of the growing ASD population. LSA operates homes for the medically fragile and also just opened the Cypress Home for five higher functioning 20 to 30-year-old men. It uses an Independent Living service-training model that “encourages residents to make their own choices and direct their own lives.”
Santi Rogers, Executive Director, San Andreas Regional Center
sarc.org
Santi said that the numbers of people with Autism are growing faster than any other Regional Center population, with no end in sight. (“Consumer Population” sheet for current data—SARC handout). Adequate services specific to the needs of this expanding population as they age (acknowledging that life spans are getting longer) have yet to be developed. Now is the right time to start this conversation. Santi stressed the importance of the Lanterman Act civil rights legislation (http://www.dds.ca.gov/statutes/statutes_home.cfm). Its basic tenet: People with Intellectual/Developmentally Disabilities (I/DD) belong in their neighborhood communities, not living in state-run institutions. Regional Centers were created to provide services in communities to people with Mental Retardation (MR), Cerebral Palsy (CP), Autism, Epilepsy, and a Fifth Category (disabling conditions closely related to MR, or requiring similar treatment). Regional Centers are mandated to support community inclusion through person-centered planning. Santi estimated that 75 to 80% of individuals assessed through the San Andreas intake department are now eligible for Regional Center services. The Department of Developmental Service (DDS) budget is now approaching $5B/yr. Over the past six years, funding for developmental services has been systematically dismantled with decreases of over $1.3b. State Budget Subcommittees (Senate/Assembly) met over the course of the first part of this year and have now made their recommendations to the Budget Committee for the 2013-14 budget. The Majority party rules (Democrats, this year). Governor Brown understated his budget this year to hold on to a “prudent reserve.” Serious discourse will take place now by Budget Committee, with millions of dollars at stake. DDS may be given funding increases for specific programs – Santi is not sure which will be identified. Senator Steinberg‘s bill (SB 126: extending dates for autism insurance reform) still in play…
Most components protected by DDS: Live: wholesome place to live. Live in a natural home. Work: major aspect of good life – opportunity and access. Relationships – long-term and short term.
Supporting Adult ASD Children Living with Parents
Connie Boyar Frenzel, Autism Society SF Bay Area
Connie has 26-year-old adult son with autism who utilizes Supported Living services. Her son now lives in Milpitas, and goes home to Connie on weekends.
See Resource List (hand out): Connie recommended all parents acquire this book: Rights Under the Lanterman Act, http://www.disabilityrightsca.org/pubs/506301.pdf. Call Disability Rights California at 800.776.5746 to obtain a copy.
Various resources to support your child living at home:
Medicaid waiver: “Institutional Deeming” (child income separated from parental income) – e.g., will pay for co-pays, more case management (home health aides), transportation, etc. Can include In Home Support Services (IHSS). A county social worker will come out to evaluate need. You can either hire a provider or be the provider of IHSS hours yourself. Check into obtaining “protective supervision” for your adult child. More IHSS hours may be granted in that case. Governor is working hard to chip this service away. IHSS reimbursement amount varies depending on where you live/county. Direct Service Provider (DSP) training can increase the hourly rate for your providers if your young adult lives at home.
Day programs: Not always a great fit for people on the spectrum, as most were not designed for people with autism. Get a list (more than 1) from your child’s Service Coordinator. Visit them before deciding.
Supplemental Security Income (SSI): http://www.ssa.gov/pgm/ssi.htm May get denied the first time around. Check out NOLO press book. \
Behavioral modification/consultants; Adaptive skills training
Emergency crisis response teams
Supported employment (including job coaching)
Independent Living Skills (ILS) training
Supported Living Services (SLS)
Adult Day Programs
Jennifer Sullivan, executive director, Morgan Autism Center
morgancenter.org
There is a dramatic need for more adult day programs that serve ASD clients, and more funding for such programs. In addition, we need continuing care after parents die or become disabled, and coordination with housing component.
In 1985 (when MAC began), very few programs were designed for people with autism. Morgan Autism Center was designed specifically to address how individuals on the spectrum think and learn. People with other developmental disabilities can attend/benefit from to MAC (or any other autism-designed programs), but not the other way around.
Day programs require: 1) Adequate and consistent staff training. Staff needs to be trained to deal with challenging behaviors. Clients and staff will get frustrated if day program is not designed well with training provided. There can be tremendous staff burnout. If staff feels confident in what they are doing, they will want to stay. 2) Specifically designed programs are needed to address the varied learning styles of the ASD population, and 3) Adequate funding is needed (pay for staff is currently “terrible”).
Staff/participant ratio is a concern: The Morgan Autism Center adult program has a 3-1 ratio and operates in a group setting, but many ASD adults can have a hard time interacting in group settings and have behaviors and limitations that require more intensive supervision. MAC tries to have 1-1 transitional support, but this is not always possible (funding, staff issues). Space is a problem at current location: MAC doesn’t have the space to support/serve those children with significant behavioral issues. Very hard for MAC to not be able to support those individuals, especially when those adults grew up at the program. MAC wants to try to create a behavioral program, but the rates for programs need to increase.
Comment by Santi Rogers: The Department of Developmental Services can increase day program rates one program at a time. ‘Health and safety’ exceptions are approved minimally. The reality is: funding for the Department has been frozen in place since 2008-2009, but could be improving soon. Rates are undervalued now. We are competing with education for the same funding.
Group Homes
Kurt Ohlfs, executive director, Pacific Autism Center for Education
pacificautism.org
Typical residential home in a neighborhood with 3 to 6 residents. Residential Care Facilities are organized according to an individual’s need for care: Level 2 (less need), 3 and 4 (most need), organized according to acuity (A-I). Ask your Regional Center Service Coordinator for details.
New models include (from Agnews closure):
Family Teaching Model: Family Home Agency: http://www.dds.ca.gov/LivingArrang/FHA.cfm
Adult Residential Facility for Persons with Special Health Care Needs: SB 962’s: http://www.dds.ca.gov/LivingArrang/962Homes.cfm
SLS hybrid models.
Analysis of group home business model:
SWOT (Strengths, Weaknesses, Opportunities, and Threats):
Strengths: Greater financial security with running more homes, larger homes. Increased number of staff pool.
Weaknesses: State pays flat median rate for cost of care. Cost of living in expensive area can make group home business model unsustainable. Pool of potential staff/caregivers limited to low pay in high cost area. Minimum wage in San Jose went up to $10/hr., and DDS has yet to accommodate. It’s costing more to keep caregivers insured (about 13 cents/dollar).
Opportunities: Housing costs lower in Dublin area.
Threats: Long-term viability. Many group homes are operated for profit, with the residential owner’s retirement built into equity of the home. When home is sold, residents often move.
Current group home living model does not guarantee long-term stability for housing adult children. May not answer the question: “Where is my child going to live when I die?”
Independent Living Services, Supported Living Services, and Co-ops
Jan Stokley, executive director, Housing Choices Coalition (HCC)
housingchoices.com
HCC was founded by a group of parents to develop housing opportunities for DD adults. HCC is funded by SARC to help consumers gain access to set-aside affordable housing. HCC works to find/support affordable housing with low-cost units. HCC helps people apply for housing in the larger community. SARC (vs. other RC’s) has gone the farthest to make these set-asides happen. There is overt discrimination—some built right into the process (e.g., low income housing is looking for profile that most of our young people won’t have: good credit report, etc.) Greatest success for our population is with the set-aside units.
Networked in the Bay Area, HCC has some of the best affordable housing developers in the area. HCC is developing high quality green housing with affordable rents—professionally managed and sustained. Dedicated wait-list for particular units in the housing complex. Rents are affordable—even without a section 8 voucher. Consumer can choose ILS or SLS and change provider without affecting their housing. Also, if new housing opportunity becomes available, individual can keep current support services. HCC focus is on properties near transportation etc.
When is Housing Affordable?
Best Case: Individual has Sec. 8 Housing Voucher and pays only 30% of household income for rent.
Next Best Case: Individual gains access to a property with voucher subsidy attached to the unit, so rent equals only 30% of the actual household income ($270 if income is $900/month) More Frequently: Rent is set to be affordable to a household earning a specific percent of the Area Median Income.
Housing Cooperatives: An independent living alternative to the group home, with an affordable rent (about $350/month): Funded by SARC to assess needs/goals/plans of perspective residents. Long wait lists for available apartments. 4 or 5 people share a single-family home. Housing coalition – 20 hours/week of on-site support by HCC for the housing community. Owned by HOPE (agency), leased to HCC. Residents choose their own ILS or SLS – support service is tailored to each individual’s need and is independent of housing choice.
Independent Living Skills (ILS) & Supported Living Services (SLS)
ILS: funded by Regional Center—train, teach, coach and monitor a person in basics of daily living. Model is teaching and coaching, mainly for higher functioning individuals.
SLS: funded by Regional Center—for more significant support. Staff working with the young person is going to provide care for them, rather than teach, facilitate and coach. If 24x7 required, this could include a Day Program plus a live-in SLS person who helps with activities of daily life. May require monitoring overnight. If live-in staff is required, that might mean a larger housing setup (e.g., more bedrooms).
Intentional Communities
Mark Jackson – Atlas Living, Sweetwater Spectrum
sweetwaterspectrum.org
Mark has a 21-year-old ASD son. Mark believes in creating “intentional communities” (his inclusive term for the Sweetwater housing model). Sweetwater Spectrum Community (Established in 2006) is a community within a community in downtown Sonoma, CA. Four four-bedroom homes for 16 residents that offer supported living with a variety of activities in common buildings across beautiful grounds filled with gardens, a pool and trees.
Mark stated that many young adults still live at home with parents, which can cause a “perfect storm” (due in part to need for many [can be 4 or more] caregivers per day: 24/7). Current trend is to separate ownership of housing from the provision of support service. Waiting for help from Regional Center can be frustrating. Service coordinator caseloads average 80 to 90 individuals; workloads impacted, housing options limited.
Mark referred to two specific pieces of legislation:
1) Olmstead Decision (1999): supported the rights of people with disabilities to live in community integrated housing: http://www.ada.gov/olmstead/olmstead_about.htm.
2) SB 812 (2012): requires cites and counties to include an analysis of the housing needs of the developmentally disabled in the analysis of special housing needs in their housing elements.
http://www.hcd.ca.gov/hpd/NoticeCoverLttrSB812.pdf
Due to funding freeze (in part Sequester driven), housing subsidies for our I/DD population are now more infrequently granted, resulting in very few “move outs” for young adults. Developmental Center placements are winding down. Our current housing options include: “Group Homes” – Mark is pessimistic about these, due to current and continued anticipated lack of adequate funding to support model. Group home residents can be more segregated. Supported Living Services: SLS – many individuals served in their family home or in community through this support model. Sustainability of these models a problem due to economies of scale.
Intentional community benefits:
Economies of scale works for activities and programs
Designed for adults on the autism spectrum
Some residents participate in ILS, others SLS
Residents go into the community regularly
Support network for other families
Ownership options
Attractive environment for volunteers/staff: larger group of staff supporting each other, onsite management
Process:
Create the vision
Raise funds
Site identification/feasibility studies
Services are provided on site: some funded by RC.
Site improvement and construction
Program, staff and resident coordination
Mark’s Advice:
Not a part-time project to envision and develop such a community. Don’t go it alone – find partners and appropriate professional help. Make sure residents will be integrated in the community: be patient to find the right location. Services and programs are as important as housing. Engage your local politicians and community. Remember – you cannot serve everyone. Tell your story from the heart to the local government and to your community/neighbors.
Anna Wang, Friends of Children with Special Needs (FCSN)
fcsn1996.org
FCSN’s mission is to help individuals with special needs and their families to find love, hope, respect, and support through integrated community involvement.
Anna stated that housing is one piece of the story. FCSN wants to “Build a brighter future for the special needs community”. They strive to provide peace of mind to families, and happiness for our children. Integrated Community Involvement: Live-Work-Play [play: e.g., lots of field trips!]. FCSN wants to turn “mortality planning” worries into positive action: The Village is the name of their Center. FCSN provides comprehensive ILS/SLS support programs, and several only Day Programs, included in nearby housing in the community.
Anna said that 26 families – bought land in cash; donated half to FCSN. Created LLC. It used no government funding. FCSN has grown significantly: 2006 Fremont Center, 2008 San Jose Satellite Center. Over 40 programs in the Bay Area now. FCSN has about 50 adults with disabilities in programs. Adult Day Programs: (a) Center-Based, and (b) Community-Based. 10-unit complex with 4 Bedrooms/unit privately owned by FCSN parents. 24/7 residents share chores around house. SLS supports those living in nearby apartments. Vendored by RC for both SLS and ILS.
Dream Project #2: Meaningful Employment: FCSN parents are working to create a comprehensive and support a plan so their adult children can have their own place of employment. This model will provide job security, happiness and satisfaction. Parents explore the talent and abilities of the participants. They then plan a business around them. It has been shown that employment for our population improves self-esteem while providing rewards and incentives.
Susan Houghton, Sunflower Hill: A Sustainable Special Needs Community
sunflowerhill.org
Sunflower Hill began with the dream of parents for their children with special needs to grow and live a community that can provide activities, security, dining options and social experiences to can sustain and enhance them for their entire lives. It’s based out of the Alameda/Contra Costa area. Parents bring various expertise and different backgrounds. 50 families in the Tri-Valley area now looking in Dublin to develop a community. There needs to be an advocacy conversation and a new funding model.
Looked at Other Examples:
1) Vine Village – a group home
2) Farms and Ranches Enabling people with Disabilities (FRED): http://www.fredconference.myevent.com
3) Golden Heart Ranch (FRED) – private pay of $4k per month
4) Bittersweet Farms:
http://www.bittersweetfarms.org/
QUESTIONS/ANSWERS:
Protecting our children from abuse, how is this done?
(JanS): Protect your child while you can still be involved, while you still have the time. Make sure there are multiple people involved in your children’s lives. Need to ensure that the responsibility for caring for your child isn’t too focused on one group.
(MJ): More eyes on staff, NO abuse is acceptable. Keep open dialogue. Have a whistleblower policy.
(KO): Whistleblower policy not always possible due to close relationships between staffs. Agencies must be transparent—someone must always be available to answer questions. Careful monitoring of financials and programming accountability (auditing) needed. You need to trust your own instincts. Watch for changes in behavioral patterns of individual (child/staff). Have a clear conversation with the agency you are working with. Abuse can involve physical and emotional/social. PACE has clearance to use cameras and listening devices in their homes.
(CBF): for ILS, child can be more isolated, so it is important to have case manager for the staff to look closely at the financial records. Is the money being used wisely? Are they eating nutritionally good diets? Training is really important. Drop in unexpectedly to identify a problem. Random sampling. Oversight must be built-in. But if you check-in too much, you can lose staff. Feeling of lack of trust = loss.
What can parents do to increase program options?
(JenniferS): Talk to Regional Center, advocate for new programming with trained staff. Training is critical. If not done well, can lead to opportunities for abuse. Need to advocate for more funding, especially when a greater than a 3:1 ratio is needed.
(CBF): Legislative changes are needed to support new day program models.
Project based housing
(JE): Project-basing through the Housing Authority can confer instant Section 8 voucher eligibility, but we need more projects (which could be investment-based or nonprofit. This is “almost free” housing using federal money.
(CBF): Need to look at task forces, bring people together to talk about this. Get each community to talk. Set-aside units: people can apply to get on wait lists. Affordable housing is a very sparse commodity.
(JanS) Lottery: Federal funding, but with HUD money, may not have ability to use for our children. When a new project comes on line, people can apply in initial lottery, then a waitlist. Must take these steps to be fair – and they want to be fair. Process must be transparent.
(AW): FCSN did not take outside (federal) funding. Parents/others that invested could own property/utilize for their children. Can rent out property for just $500 a month until the owner chooses the right to occupy. Three of her friends went into buying a house or condo, and still receive right to occupy.
Could an adult child be supported in his/her own home? What if needs include some type of 24/7 care?
(JanS): Yes. An individual could use either ILS or SLS support services across most housing models.
Housing Co-op model work if 4-5 families purchase home together?
(JanS) Yes.
(MJ): Yes, currently all have ILS, not SLS, but feasible. Staff member needed to have his/her bedroom. Could protect two bedrooms for the long-term to take on SLS support. Must protect the extra bedrooms to accept the next person who needs the SLS.
(SR) Regarding planned communities, have caution they do not turn into institutions. Separate home ownership from the day program – this can help.
What causes denial of SSI claims at age 18?
(CBF): Denial is almost routine. Tenacity gets outcomes. Keep at it!
How can adult children live in the family home after the death of their parents?
(JS): If your child is living with you, and you’d like him/her to live there after you are gone, you can place your home in trust and rely on non-profit organization with fiduciary capacity to own and run the home. See North Bay Housing Coalitions website (per MJ and SJR). http://northbayhousing.webs.com/
(JanS): Consortiums can work; business plans can work. Execution over time, driven by the needs of the individual served can be a good business plan. Certain areas have a better potential for ownership. Separate ownership from service. This is feasible.
(CBF): Make sure that any trust isn’t going to ultimately owe Medicaid payback.
Has regulatory oversight kept pace with the autism numbers?
(SJR): The current legislative leadership group is all from our districts. Public policy is open for discussion. Other bills can be discussed between sessions. Protection for our population has always been a big problem. Laws already exists…mandated reporters need to act.