Notes from: Out of the Nest: Panel on Parent-Directed Services
Marianne Sullivan and Hunter
Date and Place: November 6, 2013, PHP-Sobrato Nonprofit Center, San Jose
Speakers: Marianne Sullivan, Mary Ellen Peterson, Trudy Grable, and Marianne LaKamp
Summary: In supported or independent living, aides working for an agency help take care of your adult child in his or her own apartment or home. But many families have found third-party agencies cannot provide reliable, ongoing quality care. Many, therefore set up their own Regional Center-vendorized agencies to find, train, supervise, and pay caregivers; others form "hybrid" arrangements with both parents and agencies actively involved in the programming and ongoing care.
Speakers: Marianne Sullivan, Mary Ellen Peterson, Trudy Grable, and Marianne LaKamp
Summary: In supported or independent living, aides working for an agency help take care of your adult child in his or her own apartment or home. But many families have found third-party agencies cannot provide reliable, ongoing quality care. Many, therefore set up their own Regional Center-vendorized agencies to find, train, supervise, and pay caregivers; others form "hybrid" arrangements with both parents and agencies actively involved in the programming and ongoing care.
TRUDY MARSH GRABLE: Trudy's daughter, now an adult, became aggressive at a young age. Mom began with an agency that worked well initially but she later found parent involvement was not welcome, was not being called or consulted re behavioral problems so initiated parent-directed services. At some point, her level of involvement might not be feasible. Staff was located by networking everywhere: school, teachers, day program providers, Starbucks. Suggests parents tell everyone and also be responsible for their training. She used videos, meetings, lunches, observations. Vendorization for a parent-directed program is the same as for any agency. What worked well was matching daughter with people she likes, matching interests. Daughter participates in interviews etc. Daughter is at mom's home on weekends. Housing is a condo purchased by mom; no roommates per daughter's preference. There are a total of 7 staff in the program, and barely enough money to run the agency. Overtime rules are a problem.
Trudy runs training programs on how parents can get vendorized by Regional Centers.
MARIANNE SULLIVAN: Marianne is based in Santa Cruz, where she co-founded both the Bay School and the Coryell Center. Her son with ASD, Hunter, is now a young adult, living with aides in his own rental home. Marianne suggests that the earlier parents start the process, the better. Her son is physically very large and became very agressive as a young teen. Could not remain at school. At home agencies were brought in to help but mom turned to SLS instead, as she was concerned he would live with parents forever. Currently, son rents a home in Santa Cruz through the Section 8 voucher mom obtained after being the list for 10 years. Mom suggests parents put their children on the Section 8 wait list early (very early).
Pointed out her son's housing options were limited by the need to avoid condos and other forms of housing with shared walls due to noise, and also his need to be able to walk to places in the community and participate in meaningful activities. Thus, a rural area would not work in this case. Son's program includes work at local company (brewery). Also noted that police and fire depts. know where her son lives and are aware of his disability and limited verbal abilities to mitigate confusion and miscommunication in the event they are needed. Staff was recruited from UCSF, Cabrillo College, Craigslist. Mom suggests trying staff out for a few weeks (paid and with background checks, reference checks) to see who and what works. Major lessons include the need for supervision and case management at the same level as if son lived in parental home, which means many hours per week. Coryell is a transition Non Public School for individuals 14-22 and will also serve adults.
MARIANNE LAKAMP: Marianne is the mother of a adult son with frontal lobe syndrome from illness in infancy who was, at age 10, placed at an out of state residential school located in a rural part of PA. Upon his return at age 22 parents sought to replicate the school program as it had served his needs very well. Also, no high level care home would accept him as a client. To that end they purchased a 6-acre property in Sonora and recruited live-in staff from his former school. Mother created two separate programs: SLS/residential and day program under separate entities at separate pay rates and sources of funding. Day program activities include working at a local horse ranch, volunteer work at a food bank and thrift store. Program was set up to accomplish (based upon mom's understanding) what her son wanted and because an agency would not do this program. Mom did not want shift workers coming through and leaving. She wanted more of a family and home model. Training was per the rules set forth in Title 17 of the California Code of Regulations, shadowing, CA Direct Services Provider books, and familiarizing everyone with son's IPP and ISP.
The vendorization process began several years prior to the program as was described as "onerous." A supportive case manage at the regional center was an important element. This person understood there were no other options. Current staff will be leaving and mom remains connected to son's former PA school and will continue to try to recruit from that pool of potential employees. Lessons learned: don't try to do everything. Mom uses a payroll service, the cost of which is built into the program budget. Also she learned about how to create the budget by looking at programs created by others. Also, become familiar with the service codes used by the regional centers to categorize funding. For example, code 896 indicates a vendor, not a parent providing services. Code 793 is for parents providing services and is more limited since it does not allow a parent to take another child into their program. Regarding cost/reimbursement: regional center pays an hourly rate for residential services (SLS), IHSS hours come through the county at a lower rate and the day program is paid at a daily rate. RC funds other things than payroll at a negotiated rate. In her program, staff does not pay rent but they do pay for their own food.
MARY ELLEN PETERSEN: Mary Ellen is the director of Parents Helping Parents, and mother of an adult son with cognitive impairment who functions at the level of a very young child. At 17 son wanted to be on his own but no group would accept him and he was too young for an adult home. He spent 5 years at Devereaux but then there was no other place for him. Day programs did not work out and SLS agencies would not stay with him. Mom obtained a business license to run her own program but found it was too burdensome due to other family commitments.
She found an agency that would provide roommates and staff but would allow mom to control her son's program. There are quarterly staff meetings, son comes home on weekends and calls in the evening. Day program has a 1:1 aide and son is able to take a day off during the week to have time off from the program which includes work at food bank etc. The day off is a necessary component to mitigate behavioral problems, although some agencies will not provide less than a full time program. Parents bought the home where son now lives with 2 staff as roommates who pay rent. Overnight staff rotate although some live in. The agency is called Support Linkages (San Jose) and the day program is through Apollo. Eventually, the Good Shepard Fund (a pooled, managed fund) will be the conservator for son's funds and the house is in a trust. Further explanation of this hybrid model: mom does not own the agency but works with the agency. She handles all bills for reimbursement and son pays rent on the home.
Q/A notes:
It was pointed out that an SLS rate, which is considerably higher than IHSS (In-Home Support Services) rates through the County, requires the client to be living in their own home, not the parent's home. There was recognition that the state should do more to support parents who choose to keep their ASD children living at home. Also discussed was the tax structure issue: if parents purchase a home and it is not supported with fair market value rent from child's SSI, the house will be considered a second family home and SSI will be reduced to the amount someone recieves who lives at the parents' home.
Discussion: subsidy structures (which discourage families keeping their children at home) and tax laws need changing. Also, social security law does not necessarily agree with the above. Note, rent burden can be offset with a renter. Another problem is the disincentive to modify your home to accommodate your child: an addition would not be treated the same as a separate apartment elsewhere so you could lose the SLS services. Regional center rep: It is supposed to be the least restrictive environment and decisions will be on a case by case basis. Says parents could work around this issue unless there is a "strict law". Trudy Gable: Lanterman Act says child cannot live in parents home and receive SLS. Discussion of supplmenting IHSS rates. Discussion of resources: Housing Choices Coalition has lists of low income housing. Dana Hooper, LSA Homes is a good resource. Also, a Yahoo parent group exists and the Autism Society is starting a list serve so parents can find each other re housing and programs. Stay tuned.
Trudy runs training programs on how parents can get vendorized by Regional Centers.
MARIANNE SULLIVAN: Marianne is based in Santa Cruz, where she co-founded both the Bay School and the Coryell Center. Her son with ASD, Hunter, is now a young adult, living with aides in his own rental home. Marianne suggests that the earlier parents start the process, the better. Her son is physically very large and became very agressive as a young teen. Could not remain at school. At home agencies were brought in to help but mom turned to SLS instead, as she was concerned he would live with parents forever. Currently, son rents a home in Santa Cruz through the Section 8 voucher mom obtained after being the list for 10 years. Mom suggests parents put their children on the Section 8 wait list early (very early).
Pointed out her son's housing options were limited by the need to avoid condos and other forms of housing with shared walls due to noise, and also his need to be able to walk to places in the community and participate in meaningful activities. Thus, a rural area would not work in this case. Son's program includes work at local company (brewery). Also noted that police and fire depts. know where her son lives and are aware of his disability and limited verbal abilities to mitigate confusion and miscommunication in the event they are needed. Staff was recruited from UCSF, Cabrillo College, Craigslist. Mom suggests trying staff out for a few weeks (paid and with background checks, reference checks) to see who and what works. Major lessons include the need for supervision and case management at the same level as if son lived in parental home, which means many hours per week. Coryell is a transition Non Public School for individuals 14-22 and will also serve adults.
MARIANNE LAKAMP: Marianne is the mother of a adult son with frontal lobe syndrome from illness in infancy who was, at age 10, placed at an out of state residential school located in a rural part of PA. Upon his return at age 22 parents sought to replicate the school program as it had served his needs very well. Also, no high level care home would accept him as a client. To that end they purchased a 6-acre property in Sonora and recruited live-in staff from his former school. Mother created two separate programs: SLS/residential and day program under separate entities at separate pay rates and sources of funding. Day program activities include working at a local horse ranch, volunteer work at a food bank and thrift store. Program was set up to accomplish (based upon mom's understanding) what her son wanted and because an agency would not do this program. Mom did not want shift workers coming through and leaving. She wanted more of a family and home model. Training was per the rules set forth in Title 17 of the California Code of Regulations, shadowing, CA Direct Services Provider books, and familiarizing everyone with son's IPP and ISP.
The vendorization process began several years prior to the program as was described as "onerous." A supportive case manage at the regional center was an important element. This person understood there were no other options. Current staff will be leaving and mom remains connected to son's former PA school and will continue to try to recruit from that pool of potential employees. Lessons learned: don't try to do everything. Mom uses a payroll service, the cost of which is built into the program budget. Also she learned about how to create the budget by looking at programs created by others. Also, become familiar with the service codes used by the regional centers to categorize funding. For example, code 896 indicates a vendor, not a parent providing services. Code 793 is for parents providing services and is more limited since it does not allow a parent to take another child into their program. Regarding cost/reimbursement: regional center pays an hourly rate for residential services (SLS), IHSS hours come through the county at a lower rate and the day program is paid at a daily rate. RC funds other things than payroll at a negotiated rate. In her program, staff does not pay rent but they do pay for their own food.
MARY ELLEN PETERSEN: Mary Ellen is the director of Parents Helping Parents, and mother of an adult son with cognitive impairment who functions at the level of a very young child. At 17 son wanted to be on his own but no group would accept him and he was too young for an adult home. He spent 5 years at Devereaux but then there was no other place for him. Day programs did not work out and SLS agencies would not stay with him. Mom obtained a business license to run her own program but found it was too burdensome due to other family commitments.
She found an agency that would provide roommates and staff but would allow mom to control her son's program. There are quarterly staff meetings, son comes home on weekends and calls in the evening. Day program has a 1:1 aide and son is able to take a day off during the week to have time off from the program which includes work at food bank etc. The day off is a necessary component to mitigate behavioral problems, although some agencies will not provide less than a full time program. Parents bought the home where son now lives with 2 staff as roommates who pay rent. Overnight staff rotate although some live in. The agency is called Support Linkages (San Jose) and the day program is through Apollo. Eventually, the Good Shepard Fund (a pooled, managed fund) will be the conservator for son's funds and the house is in a trust. Further explanation of this hybrid model: mom does not own the agency but works with the agency. She handles all bills for reimbursement and son pays rent on the home.
Q/A notes:
It was pointed out that an SLS rate, which is considerably higher than IHSS (In-Home Support Services) rates through the County, requires the client to be living in their own home, not the parent's home. There was recognition that the state should do more to support parents who choose to keep their ASD children living at home. Also discussed was the tax structure issue: if parents purchase a home and it is not supported with fair market value rent from child's SSI, the house will be considered a second family home and SSI will be reduced to the amount someone recieves who lives at the parents' home.
Discussion: subsidy structures (which discourage families keeping their children at home) and tax laws need changing. Also, social security law does not necessarily agree with the above. Note, rent burden can be offset with a renter. Another problem is the disincentive to modify your home to accommodate your child: an addition would not be treated the same as a separate apartment elsewhere so you could lose the SLS services. Regional center rep: It is supposed to be the least restrictive environment and decisions will be on a case by case basis. Says parents could work around this issue unless there is a "strict law". Trudy Gable: Lanterman Act says child cannot live in parents home and receive SLS. Discussion of supplmenting IHSS rates. Discussion of resources: Housing Choices Coalition has lists of low income housing. Dana Hooper, LSA Homes is a good resource. Also, a Yahoo parent group exists and the Autism Society is starting a list serve so parents can find each other re housing and programs. Stay tuned.