The services and benefits available for individuals and for families of individuals with disabilities vary from state to state. Listed below are
resources and information (within the United States) about some of the most common issues faced during the transition from school to
adulthood, with individual independence and self-determination being the ultimate goal for adults living with LGS.
IEP Transitional Services
Transition services are intended to prepare students to move from school to adulthood. IDEA (individuals with disabilities education act)
requires that transition planning start by the time the student reaches age 16 but may begin earlier if the IEP (individualized education plans)
team decides it would be appropriate. Postsecondary goals and transitions services are considered in IDEA and include further education,
vocational training, independent living, employment, and community participation. These are the areas to be explored by the IEP team to
determine which types of transition-related support and services a student with a disability needs. Planning ahead in these areas and
developing goals for the student can greatly assist them in preparing for life after high school.
SSI & Medicaid
SSI is a program that pays monthly checks to people with disabilities (as well as the elderly and visually impaired) who have a lower income.
Payments are made on the basis of financial need. Social Security Disability Insurance (SSDI) is based on a person's prior work history or their
parents' work history under Social Security.
A child may quality for disability benefits from birth to age 18 under the SSI program. However, when a child becomes an adult at age 18,
different medical and non-medical rules are used to decide if an adult can get SSI disability payments. The income and resources of family
members do not count when deciding whether an adult meets the financial limits for SSI. If your child is already receiving SSI payments, the
child’s medical condition is reviewed when he or she turns age 18 and the "adult disability rules" are used to decide whether your 18-year-old
is disabled. If your child was not eligible for SSI before his or her 18th birthday because you and your spouse had too much income or
resources, he or she may become eligible for SSI at age 18. For more information, visit the Social Security Website.
Respite
Respite care provides short term breaks that relieve stress, restore energy, and promote balance in your life. Working with family members
or friends may be difficult, but there are many respite care options and strategies that you may not be aware of [15]. Using respite allows you
to receive support, share the responsibility of caregiving, and maintain your own health.
In-home respite: As a caregiver, you have the option to stay at home with your child while a provider can help with daily tasks. This type
of respite can be received occasionally or on a regular basis and can be set up by your caseworker or provided by volunteers.
Residential programs: Residential programs offer temporary care for varying lengths of time. Facilities such as hospitals, group homes
and nursing homes can provide emergency or planned overnight stays, giving caregivers 24-hour relief. Although medical insurance generally
does not cover overnight respite, long term care policies may subsidize care.
Independent providers: Independent providers are generally the least expensive but extensive research may be required in order to find
one you trust. It is important to conduct in-depth interviews, discuss compensation, request references, and be specific about your child's
needs.
Home care agencies: Home care agencies are often easier to use when looking for a respite provider. Typically, agencies will conduct
background checks before hiring personnel. They will also find a provider for you, handle payroll, and provide a replacement in case of sick or
absent personnel. Agencies also handle other issues such as medication, complaints or arbitration.
More information on respite care can be found at http://www.helpguide.org/elder/respite_care.htm
Living Arrangements
Depending on the state, or even the city or county you live in, there may be several options available. The resources listed below can help
you decide which questions to ask and which factors to consider when helping a young adult choose the best living arrangements.
Independent Living: Some adults choose to live independently, alone or with roommates.
http://www.independentliving.org/
Section 8: Section 8 is a program that helps people with disabilities find affordable housing. Although this brochure is specific to San Diego,
it does provide valuable information which may be useful in your research.
Foster Care: Some adults live in the home of a foster parent who can ensure they have regular supervision. This website from Oregon
describes the services provided by foster care homes (keep in mind that services vary from state to state).
Residential Facility: Often called “group homes,” residential facilities are usually staffed and funded by the social services sector. The
options vary greatly from state to state. Finding a facility you feel comfortable with is not only necessary for your child's safety, but also for
your peace of mind. http://www.familyvillage.wisc.edu/general/residential.html
With Family: Some adults choose to continue living with a family member or parents.
Additional Resources: Some local colleges will offer instruction for adults with developmental disabilities to help them learn to live
independently and to help teach skills needed when living alone. This is one example:
http://web.taftcollege.edu/student_services/independent_living.shtml
Day-to-Day Activities
After finishing school, many opportunities exist for adults with disabilities. Some states have programs through the community college that
help young adults learn more independent living skills. It is important to research all of the options available and ask as many questions as
possible.
Employment: Many disabled adults have skills and abilities that can be used to secure meaningful employment. Please view the section
below dedicated to employment to learn more about how to help any individual find a rewarding job.
Day Habilitation Programs: Day habilitation programs provide activities for adults with developmental, emotional and cognitive disabilities.
They vary greatly from state to state, but generally focus on providing a group of adults with activities within the community. Some centers
focus more on living skills while others might choose to focus on social interaction. It’s best to research the facilities available, take tours, and
ask lots of questions when making this decision.
Mentorship: Some communities have mentorship programs that match individuals with disabilities one-on-one with a mentor to help them
learn life skills (cooking, shopping, transportation, etc.) and to promote social involvement (going to movies, fairs, etc.) Additionally, some
support groups have organized their own mentorship programs with local college students.
This link is a progress note about a community inclusion experience (similar to the mentorship program), it describes the types of activities
that can occur and how they are beneficial.
Employment
According to a 1996 study following 102 adult patients with LGS, 12 worked normally (apx 10%) while 36 had part-time or sheltered jobs
(35%).[16] Work is more than just a way to make money. Having a job is an important part of every adult’s life. It provides individuals with
structure, meaning, and a sense of accomplishment. Some individuals feel productive working between five and ten hours a week where they
can provide valuable services to many different types of establishments.
If an individual is receiving Social Security benefits, it is important that they consider their earnings from employment, as this can sometimes
interfere with their benefits. Contact your local Work Incentives Planning Agent (WIPA) to learn more about earnings will affect social security
benefits. http://www.ssa.gov/work/WIPA.html
Person-Centered Vocational Guidance is the practice of involving an individual’s family, friends, teachers and providers in the vocational
exploration process. By discussing the individual’s interests, abilities and skills, a feasible employment goal can be worked out. John O’Brien
and Deb McLean are leaders in this type of exploration. They often do workshops across the country and can be reached for questions
about how to best determine an individual’s best employment options.
http://thechp.syr.edu/PCP_History.pdf
http://www.inclusive-solutions.com/pcplanning.asp
http://www.hcbs.org/moreInfo.php/source/149/ofs/50/doc/529/Consumer-Directed_Person_Centered_Planning
Vocational Rehabilitation Services: Each state has different vocational rehabilitation services, but the majority will provide employment
counseling and assistance in finding a job. Because state agencies are sometimes overburdened, it is best to go into the vocational
rehabilitation process with an employment goal that has already been thought out. Vocational Rehabilitation counselors can link you up with
a job developer to find or create that job or help individuals go through additional training in order to develop the skills needed to perform a
job.
Sheltered Workshops and Supported Employment: An additional option for individuals with developmental disabilities is supported
employment. Goodwill Industries is one example of the many organizations that will provide a supportive work environment catered to an
individual’s specific pace. The additional employment services provided are usually funded by social security.
Additional Resources:
Self Employment Resources:
http://www.diversityworld.com/Disability/selfempl.htm
http://www.communityhealthcore.com/txcsep/index.php
Self-Directed Employment:
http://www.worksupport.com/documents/proed_self-directed.pdf
Additional employment considerations for individuals with seizure disorders:
http://www.epilepsy.com/pdfs/VocRehab20042005.pdf
State Resources (can be narrowed down by state to state):
http://www.disabilityresources.org/
resources and information (within the United States) about some of the most common issues faced during the transition from school to
adulthood, with individual independence and self-determination being the ultimate goal for adults living with LGS.
IEP Transitional Services
Transition services are intended to prepare students to move from school to adulthood. IDEA (individuals with disabilities education act)
requires that transition planning start by the time the student reaches age 16 but may begin earlier if the IEP (individualized education plans)
team decides it would be appropriate. Postsecondary goals and transitions services are considered in IDEA and include further education,
vocational training, independent living, employment, and community participation. These are the areas to be explored by the IEP team to
determine which types of transition-related support and services a student with a disability needs. Planning ahead in these areas and
developing goals for the student can greatly assist them in preparing for life after high school.
SSI & Medicaid
SSI is a program that pays monthly checks to people with disabilities (as well as the elderly and visually impaired) who have a lower income.
Payments are made on the basis of financial need. Social Security Disability Insurance (SSDI) is based on a person's prior work history or their
parents' work history under Social Security.
A child may quality for disability benefits from birth to age 18 under the SSI program. However, when a child becomes an adult at age 18,
different medical and non-medical rules are used to decide if an adult can get SSI disability payments. The income and resources of family
members do not count when deciding whether an adult meets the financial limits for SSI. If your child is already receiving SSI payments, the
child’s medical condition is reviewed when he or she turns age 18 and the "adult disability rules" are used to decide whether your 18-year-old
is disabled. If your child was not eligible for SSI before his or her 18th birthday because you and your spouse had too much income or
resources, he or she may become eligible for SSI at age 18. For more information, visit the Social Security Website.
Respite
Respite care provides short term breaks that relieve stress, restore energy, and promote balance in your life. Working with family members
or friends may be difficult, but there are many respite care options and strategies that you may not be aware of [15]. Using respite allows you
to receive support, share the responsibility of caregiving, and maintain your own health.
In-home respite: As a caregiver, you have the option to stay at home with your child while a provider can help with daily tasks. This type
of respite can be received occasionally or on a regular basis and can be set up by your caseworker or provided by volunteers.
Residential programs: Residential programs offer temporary care for varying lengths of time. Facilities such as hospitals, group homes
and nursing homes can provide emergency or planned overnight stays, giving caregivers 24-hour relief. Although medical insurance generally
does not cover overnight respite, long term care policies may subsidize care.
Independent providers: Independent providers are generally the least expensive but extensive research may be required in order to find
one you trust. It is important to conduct in-depth interviews, discuss compensation, request references, and be specific about your child's
needs.
Home care agencies: Home care agencies are often easier to use when looking for a respite provider. Typically, agencies will conduct
background checks before hiring personnel. They will also find a provider for you, handle payroll, and provide a replacement in case of sick or
absent personnel. Agencies also handle other issues such as medication, complaints or arbitration.
More information on respite care can be found at http://www.helpguide.org/elder/respite_care.htm
Living Arrangements
Depending on the state, or even the city or county you live in, there may be several options available. The resources listed below can help
you decide which questions to ask and which factors to consider when helping a young adult choose the best living arrangements.
Independent Living: Some adults choose to live independently, alone or with roommates.
http://www.independentliving.org/
Section 8: Section 8 is a program that helps people with disabilities find affordable housing. Although this brochure is specific to San Diego,
it does provide valuable information which may be useful in your research.
Foster Care: Some adults live in the home of a foster parent who can ensure they have regular supervision. This website from Oregon
describes the services provided by foster care homes (keep in mind that services vary from state to state).
Residential Facility: Often called “group homes,” residential facilities are usually staffed and funded by the social services sector. The
options vary greatly from state to state. Finding a facility you feel comfortable with is not only necessary for your child's safety, but also for
your peace of mind. http://www.familyvillage.wisc.edu/general/residential.html
With Family: Some adults choose to continue living with a family member or parents.
Additional Resources: Some local colleges will offer instruction for adults with developmental disabilities to help them learn to live
independently and to help teach skills needed when living alone. This is one example:
http://web.taftcollege.edu/student_services/independent_living.shtml
Day-to-Day Activities
After finishing school, many opportunities exist for adults with disabilities. Some states have programs through the community college that
help young adults learn more independent living skills. It is important to research all of the options available and ask as many questions as
possible.
Employment: Many disabled adults have skills and abilities that can be used to secure meaningful employment. Please view the section
below dedicated to employment to learn more about how to help any individual find a rewarding job.
Day Habilitation Programs: Day habilitation programs provide activities for adults with developmental, emotional and cognitive disabilities.
They vary greatly from state to state, but generally focus on providing a group of adults with activities within the community. Some centers
focus more on living skills while others might choose to focus on social interaction. It’s best to research the facilities available, take tours, and
ask lots of questions when making this decision.
Mentorship: Some communities have mentorship programs that match individuals with disabilities one-on-one with a mentor to help them
learn life skills (cooking, shopping, transportation, etc.) and to promote social involvement (going to movies, fairs, etc.) Additionally, some
support groups have organized their own mentorship programs with local college students.
This link is a progress note about a community inclusion experience (similar to the mentorship program), it describes the types of activities
that can occur and how they are beneficial.
Employment
According to a 1996 study following 102 adult patients with LGS, 12 worked normally (apx 10%) while 36 had part-time or sheltered jobs
(35%).[16] Work is more than just a way to make money. Having a job is an important part of every adult’s life. It provides individuals with
structure, meaning, and a sense of accomplishment. Some individuals feel productive working between five and ten hours a week where they
can provide valuable services to many different types of establishments.
If an individual is receiving Social Security benefits, it is important that they consider their earnings from employment, as this can sometimes
interfere with their benefits. Contact your local Work Incentives Planning Agent (WIPA) to learn more about earnings will affect social security
benefits. http://www.ssa.gov/work/WIPA.html
Person-Centered Vocational Guidance is the practice of involving an individual’s family, friends, teachers and providers in the vocational
exploration process. By discussing the individual’s interests, abilities and skills, a feasible employment goal can be worked out. John O’Brien
and Deb McLean are leaders in this type of exploration. They often do workshops across the country and can be reached for questions
about how to best determine an individual’s best employment options.
http://thechp.syr.edu/PCP_History.pdf
http://www.inclusive-solutions.com/pcplanning.asp
http://www.hcbs.org/moreInfo.php/source/149/ofs/50/doc/529/Consumer-Directed_Person_Centered_Planning
Vocational Rehabilitation Services: Each state has different vocational rehabilitation services, but the majority will provide employment
counseling and assistance in finding a job. Because state agencies are sometimes overburdened, it is best to go into the vocational
rehabilitation process with an employment goal that has already been thought out. Vocational Rehabilitation counselors can link you up with
a job developer to find or create that job or help individuals go through additional training in order to develop the skills needed to perform a
job.
Sheltered Workshops and Supported Employment: An additional option for individuals with developmental disabilities is supported
employment. Goodwill Industries is one example of the many organizations that will provide a supportive work environment catered to an
individual’s specific pace. The additional employment services provided are usually funded by social security.
Additional Resources:
Self Employment Resources:
http://www.diversityworld.com/Disability/selfempl.htm
http://www.communityhealthcore.com/txcsep/index.php
Self-Directed Employment:
http://www.worksupport.com/documents/proed_self-directed.pdf
Additional employment considerations for individuals with seizure disorders:
http://www.epilepsy.com/pdfs/VocRehab20042005.pdf
State Resources (can be narrowed down by state to state):
http://www.disabilityresources.org/
A website from the LGS Foundation
Copyright LGS Foundation, 2010
