This week, we had our annual meeting with Alex’s “team,” a
group of professionals whom we have chosen to work with him to help him reach
his potential, and we were very pleased with how well things went. In August
2012, he qualified for the state Medicaid waiver that provides services to
people with intellectual disabilities. In our home state of Indiana, parents
typically place their children on the waiver waiting list and know that they
will likely wait for many years—often more than ten years—before their children
qualify. Recently, changes in this program have made the process move along
more rapidly to ensure that those who need services get them instead of having
to wait for them. We were especially fortunate that Alex’s waiver application
moved along at lightning speed, thanks to a caring and persistent caseworker
who helped us with the process, my ability to organize paperwork efficiently,
and the grace of God who saw our needs. When he was approved for the waiver
within only three months of applying, we felt as though we had won the lottery
because this approval essentially means that he is eligible to receive
thousands of dollars of support each year of his life. Although we have always
somehow managed to provide the therapies Alex needed through our own financial
means, we were pleased to receive assistance and relieved to know that he will
be taken care of when we’re gone.
Part of the process of obtaining the waiver is learning the alphabet soup of acronyms associated with the program: CIH, DD, ICF/IID, LOCA, etc. Although these abbreviations are probably intended to make referring to their concepts easier, they seem to create a wall between those who know them and those who don’t. During our quarterly meetings with Alex’s team, Ed has noted that he’s glad I understand the lingo, which make me feel as though I’ve mastered some sort of secret handshake. For instance, Alex receives funding from the Community Integration and Habilitation Waiver, more commonly known as CIH. The intention of this program is to keep people out of institutions and in their homes or residential placements within the community, such as group homes. This program was formerly known as the DD Waiver, or the Developmental Disabilities Waiver, but most autism parents knew it better as the Autism Waiver. The CIH is a type of ICF/IID Waiver, or Intermediate Care Facility for Individuals with Intellectual Disabilities; another is the FSW, or the Family Supports Waiver. An intellectual disability is defined as one that begins before age 22, is expected to continue indefinitely, impairs intellectual functioning and at least three of six additional areas: self-care, language, learning, mobility, self-direction, and independent living. To determine services needed, the LOCA, or Level of Care Assessment evaluates how much assistance the person needs with daily living skills. To qualify for the ICF/IID, the LOCA must determine that the person needs 24-hour supervision, as Alex does. To summarize, Alex receives the CIH Waiver, formerly known as the DD Waiver, a type of the ICF/IID Waiver, because his LOCA showed he needs constant supervision due to his autism. Of course, autism parents are used to all these lettered programs after years spent working with SLP, OT, PT, SI, ABA, IEP, and ACR for our kids with ASD. Frankly, it’s a wonder our kids ever learn language when they grow up hearing all the special needs jargon around them.
Aside from all the abbreviations and regulations, the waiver program is intended, like special education, to provide needed services to help the person overcome obstacles the disability brings. Just as the special education concept of “least restrictive environment” works to integrate special needs students in classrooms with typical students, the waiver is intended to integrate people with intellectual disabilities in the community by providing them with support to help them be as independent as possible. In special education, the annual case review (ACR) brings together those providing services for the child to assess progress and needs to determine what services should be provided, and the annual waiver meeting functions in the same way. For Alex, this means our family meets with his case manager who oversees his services, prepares his annual state budget for those services, and acts as an advocate, along with his behavioral therapist, music therapist, and a representative from the company that provides respite care. As in a special education annual meeting, basically everyone in the waiver meeting has an opportunity to make comments as the case manager takes notes and prepares the paperwork to guide service plans for the upcoming year, which requires several signatures of the participants. Even though the meeting took over an hour and required him to sign several electronic documents, Alex was remarkably patient and pleasant the entire time, which shows the progress he has made. In past quarterly meetings, he has complained of being tired or looked for ways to escape, claiming he needed to get something to drink or use the bathroom. Other than checking his watch from time to time, Alex seemed unfazed by having to sit through the meeting, and we were proud of how well he handled himself.
Besides being quite pleased with Alex’s progress, as evidenced by his behavior during the meeting and as reported by his therapists, we were reminded how fortunate we are to have found excellent professionals to work with him who genuinely care about him. The warmth of their interaction and their positive comments about Alex made us grateful that we have the support we need to help him develop the skills he needs in life. For years, we searched for the right people to work with him and often found no one who was willing or able to work with a child diagnosed with autism. Now we have a wonderful team who brings out the best in Alex and supports us as we guide him to develop his skills toward greater independence. After the struggles we have encountered in dealing with the obstacles autism has presented, we finally have professionals who know how to help, which comes as a great relief and a tremendous blessing. Knowing that God’s hand has led these people to us, we believe that He will continue to oversee Alex’s progress as he moves forward to fulfill God’s plans for his life, reassuring us that, in the end, everything will be all right.
“For He has not ignored or belittled the suffering of the needy. He has not turned His back on them, but has listened to their cries for help.” Psalm 22:24
Part of the process of obtaining the waiver is learning the alphabet soup of acronyms associated with the program: CIH, DD, ICF/IID, LOCA, etc. Although these abbreviations are probably intended to make referring to their concepts easier, they seem to create a wall between those who know them and those who don’t. During our quarterly meetings with Alex’s team, Ed has noted that he’s glad I understand the lingo, which make me feel as though I’ve mastered some sort of secret handshake. For instance, Alex receives funding from the Community Integration and Habilitation Waiver, more commonly known as CIH. The intention of this program is to keep people out of institutions and in their homes or residential placements within the community, such as group homes. This program was formerly known as the DD Waiver, or the Developmental Disabilities Waiver, but most autism parents knew it better as the Autism Waiver. The CIH is a type of ICF/IID Waiver, or Intermediate Care Facility for Individuals with Intellectual Disabilities; another is the FSW, or the Family Supports Waiver. An intellectual disability is defined as one that begins before age 22, is expected to continue indefinitely, impairs intellectual functioning and at least three of six additional areas: self-care, language, learning, mobility, self-direction, and independent living. To determine services needed, the LOCA, or Level of Care Assessment evaluates how much assistance the person needs with daily living skills. To qualify for the ICF/IID, the LOCA must determine that the person needs 24-hour supervision, as Alex does. To summarize, Alex receives the CIH Waiver, formerly known as the DD Waiver, a type of the ICF/IID Waiver, because his LOCA showed he needs constant supervision due to his autism. Of course, autism parents are used to all these lettered programs after years spent working with SLP, OT, PT, SI, ABA, IEP, and ACR for our kids with ASD. Frankly, it’s a wonder our kids ever learn language when they grow up hearing all the special needs jargon around them.
Aside from all the abbreviations and regulations, the waiver program is intended, like special education, to provide needed services to help the person overcome obstacles the disability brings. Just as the special education concept of “least restrictive environment” works to integrate special needs students in classrooms with typical students, the waiver is intended to integrate people with intellectual disabilities in the community by providing them with support to help them be as independent as possible. In special education, the annual case review (ACR) brings together those providing services for the child to assess progress and needs to determine what services should be provided, and the annual waiver meeting functions in the same way. For Alex, this means our family meets with his case manager who oversees his services, prepares his annual state budget for those services, and acts as an advocate, along with his behavioral therapist, music therapist, and a representative from the company that provides respite care. As in a special education annual meeting, basically everyone in the waiver meeting has an opportunity to make comments as the case manager takes notes and prepares the paperwork to guide service plans for the upcoming year, which requires several signatures of the participants. Even though the meeting took over an hour and required him to sign several electronic documents, Alex was remarkably patient and pleasant the entire time, which shows the progress he has made. In past quarterly meetings, he has complained of being tired or looked for ways to escape, claiming he needed to get something to drink or use the bathroom. Other than checking his watch from time to time, Alex seemed unfazed by having to sit through the meeting, and we were proud of how well he handled himself.
Besides being quite pleased with Alex’s progress, as evidenced by his behavior during the meeting and as reported by his therapists, we were reminded how fortunate we are to have found excellent professionals to work with him who genuinely care about him. The warmth of their interaction and their positive comments about Alex made us grateful that we have the support we need to help him develop the skills he needs in life. For years, we searched for the right people to work with him and often found no one who was willing or able to work with a child diagnosed with autism. Now we have a wonderful team who brings out the best in Alex and supports us as we guide him to develop his skills toward greater independence. After the struggles we have encountered in dealing with the obstacles autism has presented, we finally have professionals who know how to help, which comes as a great relief and a tremendous blessing. Knowing that God’s hand has led these people to us, we believe that He will continue to oversee Alex’s progress as he moves forward to fulfill God’s plans for his life, reassuring us that, in the end, everything will be all right.
“For He has not ignored or belittled the suffering of the needy. He has not turned His back on them, but has listened to their cries for help.” Psalm 22:24
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