Saturday night after several trips to the safe room, the staff (and the drugs) finally calmed Jonah down. Someone set us up in the Children’s Waiting Room; at least we were the only ones in there. The room had a supply of children’s videos (mostly Disney, which Jonah doesn’t really like) and a TV and DVD player. They brought in a cot for Jonah to sleep on, and I slept on a 3-foot plastic-covered love seat pushed against the wall. Luckily I had Jonah’s overnight bag already packed from our trip to the respite home, so I had a supply of diapers, wipes, and some extra clothes.
On Sunday morning M stayed with Jonah so I could drive home quick-like to shower. While I was gone, a doctor, two med students, and a social worker came in to see Jonah. They asked if he wanted to take a walk down the hall (both of which sides ended in a locked door). He said “walk hall?” in his innocent, groggy voice and then they walked him down one end of the hallway. M followed at a distance, wary of what might happen. Sure enough, out of nowhere Jonah attacked, grabbing first the glasses of the doctor and scratching her face, then going after the med students and the social worker — hitting, biting, scratching, the whole works. It took all of them plus M to subdue and hold Jonah down, keep him under control, and get him back to the safe room – then, eventually, back to “our” room.
So we spent most of Sunday on chairs in the hallway like sentries outside the bare, windowless Children’s Waiting Room. Meanwhile, Jonah slept inside on his cot with his blankee, sweaty from the exertion and the meds. Our nerves shot, we were actually afraid to be in the same room with him. I’d thought to bring along a small supply of one of Jonah’s favorite things – colored straws – and he slept with them clutched in his hand.
For hours that day M and I sat in the cold, bare, too-bright hallway. Every time we needed to use the bathroom, we had to knock on a door and wait for someone to come out, unlock a door at the end of the hall, and stand with their foot propped against the door until we came back, after which the door would be shut and locked again. Every time we wanted to leave the building, same thing. Knock on a door and wait for someone to come out and lead us down the other end of the hall and out 3 different sets of locked doors until we were in the blessed fresh air, only to drive to Stewarts or Subway quickly, grab food, and return.
All this time the social workers and doctors were trying to figure out what the hell to do with us. Things never happen quickly (if at all) in hospitals on weekends, and crisis intervention wards are much the same. Sunday passed slowly, without much news. Four Winds wouldn’t take him because they had no beds – and besides, he was deemed not verbal enough to participate in “therapy sessions.” The hospitals in the area wouldn’t take him because he was too violent and would need one-on-one care – even though I promised to sit with him 24/7. Respite homes were called. Residences. Institutions. Always there was a reason he couldn’t go to one of them. He was too young. There were no beds. He was too violent. A permanent placement home was suggested, but I’m not ready for that drastic a measure yet. We just started him on meds, for fuck’s sake. You can’t just expect me to place him in a home without trying other options.
We hoped for better news on Monday. Sunday night a doctor came to talk to me who I immediately liked. When he heard how long we’d been waiting in that same room for something to happen, he was appalled. He thought Jonah needed to be hospitalized to rule out medical causes of the sudden, violent, seizure-like behaviors. And he thought Jonah might be experiencing something called “steroid psychosis” from the Reticert implant in one eye. (Jonah needed an eye operation back in February to save the sight in his left eye, and they’d replaced the lens and also implanted the Reticert device which time-releases steroids locally to the eye itself). But even though it had been in place for months, doc said, the steroid psychosis could happen at any time. The doc went to investigate and we were hopeful that this would be the thing that could get us on the path to getting out. A few hours later he came back to report that he couldn’t get us into the hospital and that his theory about steroid psychosis proved unfounded. And because he was just the night doctor, he soon disappeared. That night M slept on the cold floor between Jonah and me, just in case Jonah decided to attack. And anxiously we half-slept, our bodies on an auto-alert for one of Jonah’s furies. Jonah woke at 3am, agitated and confused, and I knocked on the staff door to request more meds to quiet him again.
I kept family and close friends informed by text; on more than one occasion people brought food and treats to the door, where I’d come out to meet them like a prisoner or cave creature and then secret myself away inside again. My mom and aunt ran to the store to buy some of Jonah’s favorite Barney and Thomas the Tank Engine DVDs. Once a day or so I’d ask to be let out of the building (they’d only let me leave if someone was there to watch Jonah, and thank God M was there for most of the time) and I would pace the grounds, crying. I’d almost always call someone, usually my dad, just to vent. I can’t believe there isn’t anywhere for us to go, I kept saying. I’m so tired. I’m so scared. I can’t do this anymore.
This whole time, of course, other incoming crisis patients were being questioned in interview rooms just feet away from us. One guy kept telling the staff to stop experimenting on him. Another complained that his mother wouldn’t let him use her pots and pans to cook. A teenage girl walked by with something like pride, sporting a bloodied shirt and bandaged wrist. An older, obviously drunk man shouted obscenities and demanded that they not throw him out on the street “like last time.” We found ourselves alternately horrified, curious, saddened, and eventually even entertained by the parade of folk coming in over the course of our long stay. By Monday afternoon we half-laughed that the psych ward was our new apartment. We watched The Wizard of Oz three times and picked at the food they offered us once or twice a day. Our backs ached and our minds reeled and our nerves were strung like piano wire as we waited and waited and waited.
All day long on Monday, whenever Jonah wasn’t medicated or sleeping, he cried and whined. “Car ride?” he begged. “Wan go see train?” Then: “Home?” Over and over and over he begged. “Grandma’s house?” “Daddy comin’?” M and I tried to placate him. “Number one, doctor. Number two, car ride!” we’d say. Or: “Home tomorrow.” When it got too much for me to listen to Jonah’s incessant pleading, I’d ask to be let outside again where I’d take deep breaths of air, pace, cry, and pray. Please help me. Help my little boy. Please. Please. Please.
One social worker tried hard for two days to get us in somewhere. She kept hitting roadblocks, and eventually started calling in a wider and wider radius outside the Albany area in her search. There was talk of places in Rochester – New York City – even Boston – where Jonah would be admitted and I could stay at a Ronald McDonald House. I panicked, thinking of the work I’d miss and how incredibly far away I’d be from M and all my family and friends. Torn between desperation and an ever-increasing need to get the hell out of CDPC, I awaited some news. Any news. There was nothing.
Finally a fantastic social worker from Wildwood came to help. She started advocating for us and demanding answers. CPS set up another team meeting (the one originally scheduled for 9am in downtown Albany) at 1:30pm on Tuesday, providing something else didn’t open up for us before then.
It didn’t.
By the time they came to get me for the meeting, my mind was made up. I’d had enough: we were leaving, no matter what I had to do. The sensory deprivation alone was probably damaging all of us — especially Jonah — by then, and I wanted out. During the meeting, attended by representatives and caseworkers from Wildwood, CPS, CDPC, OPWDD, and other acronym-laden places, I announced this in no uncertain terms. “We’re going home,” I stated flatly. Everyone got a chance to talk, and brainstorm, and the events since Friday were related, but mostly I got placed on a lot of waiting lists for different support services and respite care places. My dad spoke up at one point, saying he loved Jonah dearly but his main concern was for me. “My daughter can’t take much more of this,” he said. “She’s done an incredible amount of legwork and research, and she is a strong, smart woman. But if she’s not assisted, how can she help her son?” I was flattered at my dad’s view of what I regarded as merely surviving, and was recharged anew to insist we go home.
In fact I used the room phone right in the middle of the meeting to call my family doc and ask for a prescription of the meds. Then I told the people assembled that I would continue to pursue medical answers for Jonah on an outpatient basis, and I would wait to hear from several interested respite sitters from Wildwood School, plugging them in wherever I could. I think those assembled were relieved. I don’t know how long they would have kept us in a holding pattern at CDPC, but after three nights and three days of it, I simply couldn’t take it anymore.
After the meeting, I went down to the cot where Jonah was sleeping and I gently woke him. “Guess what, bunny?” I said brightly. “We’re going home!” As tired and groggy as he was, Jonah shot right up and parroted “home?!” So we packed up all our accumulated crap and got he hell out of there. We went to see the train and we visited grandma and we ate spaghetti and meatballs. We even slept in a bed (oh, the sweet glory of a bed) for the first time in four nights.
I sent Jonah back to school on Wednesday, using the day to make phone calls to ten thousand different people and agencies, seeking respite care so I could make it to work when Jonah had a day off from school or was on a break. I don’t know when Andy will be able to have supervised visits again, let alone unsupervised – and I have three important business trips coming up in November to try my damnedest to make happen.
Jonah struggled behaviorally on Wednesday but did better today. And no aggressions at home at all, thank God and little baby Jason. Now I have to fight our insurance company to prove this is a ‘qualifying event‘ to get him back on my plan so he can see all the docs he needs to see who won’t take Medicaid. (I’d set him up two years ago on the Medicaid waiver for individuals with disabilities, not realizing I should have kept my primary insurance in place for him as well). And I need that respite care, stat. I have another thousand calls to make tomorrow after doing a hundred things today (calling the Albany Autism Society, picking up Jonah’s eye drops, new meds & diapers, pestering Catholic Charities, and even speaking with Michael Carey), and now I’m geared up for a fight with the insurance company. I will be at their office in person first thing in the morning with an appeal form all filled out, ready to advocate for myself and my son.
If our situation isn’t a qualifying event, dammit, I don’t know what is.
This is getting downright ridiculous. How did everything go so haywire in such a few short months? It’s as if I started this blog with perfect timing to provide my readers with a front-row seat for this train wreck of my life.
I actually have to remind myself to breathe – and there are times I am so exhausted and dispirited, I don’t even want to anymore. Some people say I am strong but I’m not strong. I haven’t lifted anything; something has been placed upon me. I haven’t held up under pressure; I’ve yielded to tears and self-pity and weakness. And worst of all, I haven’t accomplished anything more than arranging for stronger meds and places on waiting lists. It isn’t enough. Our entire existence depends on my job, and I have to protect our livelihood.
I’ll do just that tomorrow, dammit, or die trying.
– – –
Thank you to everyone who has written or commented with suggestions and support. I hear you, and am grateful.
Sadly, this situation is not unique. OPWDD is dragging its feet in creating in home behavioral services but can still build and fund group residences and institutions for the less severely involved. Once a person is labeled as violent generally no agency instate or out of state will take the person. Yes the medical reasons for this series of behaviors need to be investigated and Boston seems to be the closest and best place to do so. Yes you need to keep all forms of insurance public and private to cover what can happen. For those who want a broader view on what is going on at the State level, I am including the testimony I gave at Assemblyman Ortiz’s hearing on the budget fight over family support services.
Summary:
New York State has failed to provide necessary family support services to families on an inclusion basis as the least restrictive environment beneficial to developing children and adults needing decent safe housing. New York State needs to reallocate existing resources from the more restrictive and expensive institutional environments to meet the needs of the growing autism community. New York State should provide due process for those seeking needed services in the least restrictive environments and not compel individuals into more restrictive environments to obtain needed services.
Findings:
New York State’s funding for family support programs for family members with developmental disabilities has long been eclipsed by funding for institutional, out of family placements. The Willowbrook legacy and the need to move large client populations out the institutions dominated policy making and funding decisions.
While the Wyatt v. Stickney 1971-1972 series of decisions set detailed standards for institutional care, no similar standards have been set for family support programs. However, there does not seem to be a rational basis to prevent applying the core values of Wyatt v. Stickney,344 F.Supp. 387 – Dist. Court, MD Alabama 1972 decisions to family support programs:
“ Because the only constitutional justification for civilly committing a mental retardate, therefore, is habilitation, it follows ineluctably that once committed such a person is possessed of an inviolable constitutional right to habilitation.”[6]
[6] It is interesting to note that the Court’s decision with regard to the right of the mentally retarded to habilitation is supported not only by applicable legal authority, but also by a resolution adopted on December 27, 1971, by the General Assembly of the United Nations. That resolution, entitled “Declaration on the Rights of the Mentally Retarded”, reads in pertinent part:
“. . . The mentally retarded person has a right to proper medical care and physical therapy and to such education, training, rehabilitation and guidance as will enable him to develop his ability and maximum potential.”
“II. Adequate Habilitation of Residents
1. Residents shall have a right to habilitation, including medical treatment, education and care, suited to their needs, regardless of age, degree of retardation or handicapping condition.
2. Each resident has a right to a habilitation program which will maximize his human abilities and enhance his ability to cope with his environment. The institution shall recognize that each resident, regardless of ability or status, is entitled to develop and realize his fullest potential. The institution shall implement the principle of normalization so that each resident may live as normally as possible.
3. a. No person shall be admitted to the institution unless a prior determination shall have been made[1] that residence in the institution is the least restrictive habilitation setting feasible for that person.
b. No mentally retarded person shall be admitted to the institution if services and programs in the community can afford adequate habilitation to such person.
c. Residents shall have a right to the least restrictive conditions necessary to achieve the purposes of habilitation. To this end, the institution shall make every attempt to move residents from (1) more to less structured living; (2) larger to smaller facilities; (3) larger to smaller living units; (4) group to individual residence; (5) segregated from the community to integrated into the community living; (6) dependent to independent living.”
“To deprive any citizen of his or her liberty upon the altruistic theory that the confinement is for humane therapeutic reasons and then fail to provide adequate treatment violates the very fundamentals of due process.” Judge Johnson 344 F. Supp.387-Dist. Court, MD Alabama 1971
New York State has increasingly left the burden of providing services and supports in the least restrictive environment to the family and whatever mainstream community resources are available to the family. Even temporary supports such as over night respite services are available only in more restrictive environments. The wide range of autism related developmental disabilities largely hinders the development of the traditional group services requiring a uniformity of needs. The lack of social and communication skills makes participation in more restrictive group setting programs difficult for those in the autism spectrum. Yet restrictive, out of home group placements were traditionally the most available form of family support services offered by New york State funded programs. A continuum of services provided in environments ranging from the most to the least restrictive means nothing if a person must select the more restrictive environments to obtain needed services.
One reason for the limited range of environments was the restriction of State funded services to those classified as mentally retarded. New York State finally rejected the MR concept limitations by adopting developmentally disabled with a wider range of disabilities both in its name and in the clients served. Significantly the two thirds of those in the autism spectrum who have average or above average levels of intelligence but have developmental disabilities are no less eligible for OPWDD services.
OPWDD annual updates of its Five Year State Plan provides information on the gap between funding for family support services in the least restrictive setting and in funding for services in the most restrictive settings. The findings of the Autism Action Network have not changed from the hearing on the plan draft:
“ The plan notes that Family Support has increased to $82,000,000. The Home and Community Based Services waiver now has 69,940 people enrolled. Consolidated Supports and Services now has 429 active plans. Yet all of this pales next to the $2.7 billion spent annually on ICF-MR facilities for 8,060 individuals as reported by the United Cerebral Palsy report “The Case for Inclusion 2009.”
If you look at the age distribution chart on page 5 of the plan, you will see the great disparity between the numbers served and the distribution of funds. If you draw a line
through the 22-44 age bar and look to the right, you will see $2.7 billion in spending. If you look to the left , you will see the majority of the population served and $82 million in funding. “
Last year OPWDD sent families bills for the in home services their children receive. OPWDD claimed the bills were to remind families to complete the annual medicaid certification or face paying for the services out of their own pockets. The bills included charges for MSC coordination of $300/month and respite worker hourly pay of $30.
Families who have not yet received medicaid approval can not obtain services from OPWDD and the agencies providing services unless they agree to pay out of pocket. Families are reportedly waiting 5 years to receive medicaid funding and 10 years to receive in home services.
The United Cerebral Palsy Report ‘The Case for Inclusion 2009” showed that New York State is falling behind other states in providing inclusion based services but exceeding the costs of other sates in providing services in more restrictive environments. At the
family level this means that families are struggling to carry out therapies that mirror those provided in school, apply behavior modification theories and provide the necessities of life without necessary supports such as one on one aids or before / after school programs. Families dealing with a child who is having a meltdown need immediate support but must wait for a crisis team to arrive from a distance or hope that possible meltdowns occur during the period when a crisis team is operating. While institutions have staff available to help in a crisis, a family must often rely on its members, friends or local first responders who might have no training in autism.
Remaining as part of the family in the family home is crucial for a typical child in developing abilities and skills. For a child with autism loving family support is more crucial in improving social and communication skills along with all the other emerging skills and abilities.
Individuals with autism can have complex medical needs requiring care from several medical specialists. They might need to take medications on a regular schedule. OPWDD practices requiring nurses to administer medications or staff with special training limits the availability of programs and services for those with medical needs. Families are now expected by health insurance to perform routine medical procedures in the home instead of an institutional setting. These families rarely can access necessary respite or other services. Changing OPWDD restrictions on program access with medical needs need not result in increased program costs.
Families need environmental modifications. Some children with autism break windows because they like the sound of breaking glass. Their families need windows that meet the only formal legal standard for unbreakable glass: the Miami Dade hurricane standard glass. Other families need GPS tracking devices for their children who wander. Some children run. Their families use specially trained dogs who herd the child back home. Some dogs are harnessed to the child and are trained to sit when a child runs to slow the child down. Some families need fences and special locks to keep a child from
leaving the house and wandering. During the past year 49 children with autism wandered off and drowned because they were attracted to water but could not swim. Other children like to play with stoves so families must remove them or use special devices to keep the stove off.
Adulthood does not mean the end of living at home. The Urban Land Institute Report “Opening Doors” found that 79% of young adults with ASD lived at home. The unemployment rate for adults with autism is 90% as opposed to 67% for adults with disabilities. Since SSI limits the amount a person can earn, there is an immediate earnings cap on someone who has SSI and wants to have more by working. In 2006 the national average rents for 1 bedroom and efficiency apartments began to exceed the entire monthly SSI payment. The Urban Land Institute points to these statistics to demonstrate the limited options for a reasonable life available to those with autism. The Institute recommended separating the ownership of group residences from the provision of services. The separation would allow consumers to shop for the best service providers without risking loss of their home.
Recommendations:
New York State needs to fund family support services at the level necessary to insure that an individual need not be coerced into a more restrictive environment to obtain necessary services. During this period of fiscal crisis, New York State will have to reallocate fiscal services from more restrictive environments to obtain funding levels comparable to those of other states with a higher level of inclusion.
New York State needs to insure that due process is available to those seeking services in the least restrictive, family based environment by eliminating unreasonable waiting periods for medicaid funding and services.
New York State needs to develop mixed service streams combining medical care and developmental services from a variety of sources, not just the existing agency network
New York State needs to fund and support new agencies offering needed services and supports to the autism community to reduce waiting periods and the uneven distribution of critical services.
New York State should greatly expand and streamline the Consolidated Support Services program that allows families to bypass agencies to hire qualified support staff. The money saved by eliminating the 20% to 30% agency overhead charges would pay for the expansion and allow the hiring of skilled workers at appropriate salary levels.
New York State should allow and assist families to pool resources to create housing co-operatives and condominiums to expand the supply of affordable housing. This affordable hosing could be financed through existing housing programs and the elimination of agency 20% to 30% overhead charges.
New York State should require agencies administering group residences upon the request of residents and their families to sell those residences at fair market price to co-operatives formed by the residents and their families who could then hire companies or individuals to manage the properties as necessary. The money gained from the sales would retire any associated state debt and be used to fund Consolidated Support Services and Portal transition services.
LikeLike
Sadly, this situation is not unique. OPWDD is dragging its feet in creating in home behavioral services but can still build and fund group residences and institutions for the less severely involved. Once a person is labeled as violent generally no agency instate or out of state will take the person. Yes the medical reasons for this series of behaviors need to be investigated and Boston seems to be the closest and best place to do so. Yes you need to keep all forms of insurance public and private to cover what can happen. For those who want a broader view on what is going on at the State level, I am including the testimony I gave at Assemblyman Ortiz’s hearing on the budget fight over family support services.
Summary:
New York State has failed to provide necessary family support services to families on an inclusion basis as the least restrictive environment beneficial to developing children and adults needing decent safe housing. New York State needs to reallocate existing resources from the more restrictive and expensive institutional environments to meet the needs of the growing autism community. New York State should provide due process for those seeking needed services in the least restrictive environments and not compel individuals into more restrictive environments to obtain needed services.
Findings:
New York State’s funding for family support programs for family members with developmental disabilities has long been eclipsed by funding for institutional, out of family placements. The Willowbrook legacy and the need to move large client populations out the institutions dominated policy making and funding decisions.
While the Wyatt v. Stickney 1971-1972 series of decisions set detailed standards for institutional care, no similar standards have been set for family support programs. However, there does not seem to be a rational basis to prevent applying the core values of Wyatt v. Stickney,344 F.Supp. 387 – Dist. Court, MD Alabama 1972 decisions to family support programs:
“ Because the only constitutional justification for civilly committing a mental retardate, therefore, is habilitation, it follows ineluctably that once committed such a person is possessed of an inviolable constitutional right to habilitation.”[6]
[6] It is interesting to note that the Court’s decision with regard to the right of the mentally retarded to habilitation is supported not only by applicable legal authority, but also by a resolution adopted on December 27, 1971, by the General Assembly of the United Nations. That resolution, entitled “Declaration on the Rights of the Mentally Retarded”, reads in pertinent part:
“. . . The mentally retarded person has a right to proper medical care and physical therapy and to such education, training, rehabilitation and guidance as will enable him to develop his ability and maximum potential.”
“II. Adequate Habilitation of Residents
1. Residents shall have a right to habilitation, including medical treatment, education and care, suited to their needs, regardless of age, degree of retardation or handicapping condition.
2. Each resident has a right to a habilitation program which will maximize his human abilities and enhance his ability to cope with his environment. The institution shall recognize that each resident, regardless of ability or status, is entitled to develop and realize his fullest potential. The institution shall implement the principle of normalization so that each resident may live as normally as possible.
3. a. No person shall be admitted to the institution unless a prior determination shall have been made[1] that residence in the institution is the least restrictive habilitation setting feasible for that person.
b. No mentally retarded person shall be admitted to the institution if services and programs in the community can afford adequate habilitation to such person.
c. Residents shall have a right to the least restrictive conditions necessary to achieve the purposes of habilitation. To this end, the institution shall make every attempt to move residents from (1) more to less structured living; (2) larger to smaller facilities; (3) larger to smaller living units; (4) group to individual residence; (5) segregated from the community to integrated into the community living; (6) dependent to independent living.”
“To deprive any citizen of his or her liberty upon the altruistic theory that the confinement is for humane therapeutic reasons and then fail to provide adequate treatment violates the very fundamentals of due process.” Judge Johnson 344 F. Supp.387-Dist. Court, MD Alabama 1971
New York State has increasingly left the burden of providing services and supports in the least restrictive environment to the family and whatever mainstream community resources are available to the family. Even temporary supports such as over night respite services are available only in more restrictive environments. The wide range of autism related developmental disabilities largely hinders the development of the traditional group services requiring a uniformity of needs. The lack of social and communication skills makes participation in more restrictive group setting programs difficult for those in the autism spectrum. Yet restrictive, out of home group placements were traditionally the most available form of family support services offered by New York State funded programs. A continuum of services provided in environments ranging from the most to the least restrictive means nothing if a person must select the more restrictive environments to obtain needed services.
One reason for the limited range of environments was the restriction of State funded services to those classified as mentally retarded. New York State finally rejected the MR concept limitations by adopting developmentally disabled with a wider range of disabilities both in its name and in the clients served. Significantly the two thirds of those in the autism spectrum who have average or above average levels of intelligence but have developmental disabilities are no less eligible for OPWDD services.
OPWDD annual updates of its Five Year State Plan provides information on the gap between funding for family support services in the least restrictive setting and in funding for services in the most restrictive settings. The findings of the Autism Action Network have not changed from the hearing on the plan draft:
“ The plan notes that Family Support has increased to $82,000,000. The Home and Community Based Services waiver now has 69,940 people enrolled. Consolidated Supports and Services now has 429 active plans. Yet all of this pales next to the $2.7 billion spent annually on ICF-MR facilities for 8,060 individuals as reported by the United Cerebral Palsy report “The Case for Inclusion 2009.”
If you look at the age distribution chart on page 5 of the plan, you will see the great disparity between the numbers served and the distribution of funds. If you draw a line
through the 22-44 age bar and look to the right, you will see $2.7 billion in spending. If you look to the left , you will see the majority of the population served and $82 million in funding. “
Last year OPWDD sent families bills for the in home services their children receive. OPWDD claimed the bills were to remind families to complete the annual medicaid certification or face paying for the services out of their own pockets. The bills included charges for MSC coordination of $300/month and respite worker hourly pay of $30.
Families who have not yet received medicaid approval can not obtain services from OPWDD and the agencies providing services unless they agree to pay out of pocket. Families are reportedly waiting 5 years to receive medicaid funding and 10 years to receive in home services.
The United Cerebral Palsy Report ‘The Case for Inclusion 2009” showed that New York State is falling behind other states in providing inclusion based services but exceeding the costs of other sates in providing services in more restrictive environments. At the family level this means that families are struggling to carry out therapies that mirror those provided in school, apply behavior modification theories and provide the necessities of life without necessary supports such as one on one aids or before / after school programs. Families dealing with a child who is having a meltdown need immediate support but must wait for a crisis team to arrive from a distance or hope that possible meltdowns occur during the period when a crisis team is operating. While institutions have staff available to help in a crisis, a family must often rely on its members, friends or local first responders who might have no training in autism.
Remaining as part of the family in the family home is crucial for a typical child in developing abilities and skills. For a child with autism loving family support is more crucial in improving social and communication skills along with all the other emerging skills and abilities.
Individuals with autism can have complex medical needs requiring care from several medical specialists. They might need to take medications on a regular schedule. OPWDD practices requiring nurses to administer medications or staff with special training limits the availability of programs and services for those with medical needs. Families are now expected by health insurance to perform routine medical procedures in the home instead of an institutional setting. These families rarely can access necessary respite or other services. Changing OPWDD restrictions on program access with medical needs need not result in increased program costs.
Families need environmental modifications. Some children with autism break windows because they like the sound of breaking glass. Their families need windows that meet the only formal legal standard for unbreakable glass: the Miami Dade hurricane standard glass. Other families need GPS tracking devices for their children who wander. Some children run. Their families use specially trained dogs who herd the child back home. Some dogs are harnessed to the child and are trained to sit when a child runs to slow the child down. Some families need fences and special locks to keep a child from leaving the house and wandering. During the past year 49 children with autism wandered off and drowned because they were attracted to water but could not swim. Other children like to play with stoves so families must remove them or use special devices to keep the stove off.
Adulthood does not mean the end of living at home. The Urban Land Institute Report “Opening Doors” found that 79% of young adults with ASD lived at home. The unemployment rate for adults with autism is 90% as opposed to 67% for adults with disabilities. Since SSI limits the amount a person can earn, there is an immediate earnings cap on someone who has SSI and wants to have more by working. In 2006 the national average rents for 1 bedroom and efficiency apartments began to exceed the entire monthly SSI payment. The Urban Land Institute points to these statistics to demonstrate the limited options for a reasonable life available to those with autism. The Institute recommended separating the ownership of group residences from the provision of services. The separation would allow consumers to shop for the best service providers without risking loss of their home.
Recommendations:
New York State needs to fund family support services at the level necessary to insure that an individual need not be coerced into a more restrictive environment to obtain necessary services. During this period of fiscal crisis, New York State will have to reallocate fiscal services from more restrictive environments to obtain funding levels comparable to those of other states with a higher level of inclusion.
New York State needs to insure that due process is available to those seeking services in the least restrictive, family based environment by eliminating unreasonable waiting periods for medicaid funding and services.
New York State needs to develop mixed service streams combining medical care and developmental services from a variety of sources, not just the existing agency network
New York State needs to fund and support new agencies offering needed services and supports to the autism community to reduce waiting periods and the uneven distribution of critical services.
New York State should greatly expand and streamline the Consolidated Support Services program that allows families to bypass agencies to hire qualified support staff. The money saved by eliminating the 20% to 30% agency overhead charges would pay for the expansion and allow the hiring of skilled workers at appropriate salary levels.
New York State should allow and assist families to pool resources to create housing co-operatives and condominiums to expand the supply of affordable housing. This affordable hosing could be financed through existing housing programs and the elimination of agency 20% to 30% overhead charges.
New York State should require agencies administering group residences upon the request of residents and their families to sell those residences at fair market price to co-operatives formed by the residents and their families who could then hire companies or individuals to manage the properties as necessary. The money gained from the sales would retire any associated state debt and be used to fund Consolidated Support Services and Portal transition services.
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Hi Amy, being in the UK I know nothing of New York, Boston or US procedures and health insurance policies. I have simply read your latest posts and my heart goes out to you.
Strength comes in many forms. You may feel you are at the end of your tether but strength is also about letting go and admitting your helplessness which you have done.
Just as one straw can break the camel’s back, so can one kind act make the world seem a better place. I hope you get that one kind act today and that it comes in the form of support and respite.
Through all this, your picture of your sleeping child is beautiful.
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If you are wondering why there would be a medical problem causing a behavior problem, the answer is complex since autism is complex. Some children with autism can have underlying medical conditions causing pain and discomfort. Autism hampers communication so a child in pain from a toothache, appendicitis or other reason can be unable to tell that he/she is in pain or where the pain is located. One doctor described how a child with autism nearly destroyed her waiting room before seeing the doctor. The doctor had to spend an hour with the child before repeated examinations and questions revealed the problem. Some children in the spectrum have gastro-intestonal problems that cause chronic pain. Children with these problems attempt to cope by easing the pain through assuming certain body positions. They can also not sleep, act out and express the pain in ways that appear to be a child totally out of control.
Some children with autism have seizures. One theory holds that some seizures shut down a person’s ability to manage their behavior so the person acts out.
Another theory holds that children with autism can be overwhelmed by the sensory impact of their environment such as light, sound or other stimuli. These children have nervous system that in effect short out by being overloaded by sensations and have major meltdowns.
All of these children can have a combination of all of the above medical conditions. The only way to resolve the behaviors is to treat the underlying medical conditions. These children are not mentally ill so treatment with psychotropic drugs does not resolve the underlying medical causes or end the resulting behaviors. At best the psychotropic drugs sedate a person and appear to remove the aggressive behaviors but do not treat the underlying medical problems.
Boston has hospitals and doctors who treat these underlying medical conditions. There are also functional MRI’s which allow doctors to see how a brain functions over a period of time in response to various tests.
Strong Hospital located in Rochester, New York has a child developmental center which can conduct a wide range of developmental assessments to provide a baseline understanding of a child’s development to create a broad, detailed overview.
None of this is simple or easy. Parents end up putting the rest of their life on hold to get the necessary information to understand the challenges facing their child. Keep in mind that there are no neat visible signs of these underlying medical problems so parents have to observe and report on behavior along with the events preceding and following. Parents have no choice but to focus on gathering this information because autism blocks a child’s ability to communicate with words.
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Amy,
I’m not sure how many followers you have on here, but many I’m sure can see themselves in your story. As your emotions and feelings are are explored, many heads are nodding in recognition. It sounds like you have a strong spiritual belief system, hold tight to it. I believe that your pleas are not only heard here on your blog, and in the end you will come to see that you were never alone on this journey of yours. Stay strong and know that no matter how ugly things appear to be, regardless of Jonah’s verbal limitations, when he goes to sleep tonight he will know he is loved. I have not given up on your behalf, I swing hard too, you are not alone in this fight. I’ll be in touch.
Charlene
(Autism Society)
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oh, girl. you *are* strong, you *are* surviving, you *are* doing an amazing job, and us? out here? in internetland?
we are *all* looking up at the sky and sending you love.
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Amy –
I’ve been reading this blog regularly and with increasing concern. I promise to get a big package of words and music in the post to you this week. Does not solve any problems, but sometimes a bit of distraction can help. Sending you much love.
C xoxo
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Ms. Roth-
How do I put this politely? SHUT UP. Your comments are just a batch of incessant babbling that have no purpose other than to show that you’ve done some research. No one needs to see the same comment repeated twice (as done on this post) or have the author of this blog degraded by your “congratulations” posts.
Amy has gotten all of the information that you think you are imparting to her in your posts already. She is one of smartest, well read people I know on this Earth. She does not need to be “educated” by the likes of you.
So, again. Politely. Shut up.
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Kileigh,
right on! I have asked the same thing of Miss Marcia. Ugh. For goodness sakes amy block that crazy freak!
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I did not intend to post this twice so one should be taken down.
I am not writing about Amy. I am writing about the service system which should be providing positive support to her son but is not. You are focused on Amy. I am focused on the world of autism, the people in the world and the people outside looking in who have no idea what the autism world is really like. Amy is presenting one view but there are millions of other views because for every person affected there is a whole family tree affected.
If I congratulate Amy it is because having been there and done that. I know that identifying the reasons for a meltdown is the key to achieving control as a parent and to becoming a positive support for your child. Too many of us are living with criticism that has no basis in fact and weakens our ability to parent. If none of us have a crystal ball that allows us to make perfect decisions, neither does any one else.
None of the negative events Amy and especially her son have had to dealt with would have happened if her son was getting the positive supports he needs. Sadly Amy and her son are not unique in the lack of support and therapies. Their story and different ones just as difficult are shared by thousands of families in this state and other countries. If you want to protect Amy, then think about about all the other families and individuals who need protection and support. I am talking about all the negative reasons and strange ideas that are harming individuals affected by autism, because I am working with others in the autism world to create a more supportive and safer place. Amy and other parents have a right to know why they do not have necessary supports along with basic access to medical care and therapies. We don’t do pity parties but we do fight for our children so they have access to necessary medical care and therapies. No we will not shut up until our children are safe and have the supports they need as well as access to medical care.
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Right, However, we ARE reading about AMY, and talking about AMY. once again, for the 5th time now, write a blog on your blog, not on Amys comments. No one, I repeat NO ONE appreciates it.
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