Guardianship Of An Individual With A Developmental Disability: Fill & Download for Free

Here’s the answer I posted to a similar question:I can answer this one because it’s the situation I have with my son, who is now 25. He suffered a brain injury shortly after he was born and it became apparent pretty quickly that he was going to be seriously disabled, physically and cognitively. When he “aged out” of the public education system, at 22, we had a dilemma. There was no longer anything to occupy him with his days, and his dad and I were getting too old to continue providing daily care. We had researched it, so we knew there are facilities that provide care 24/7 and these are paid for by Medicaid, supplemented by Social Security. The parent must go to court to obtain legal guardianship for the adult child, then apply on the child’s behalf for Medicaid and Social security. There is no “spend-down” requirement for Medicaid in such a situation because parents are not required legally to support a child after age 18.The care facilities available to the developmentally disabled range from standard nursing homes to specialized care/living facilities. The terrible truth, however, is there are not enough vacancies in these settings to accommodate all the people needing residential care. In my home state, Illinois, I’m told there's something like 25,000 individuals waiting for an available vacancy in residential care settings. Their legal guardians must apply to these places, then go on a waiting list until a vacancy opens. Vacancies become available when a resident dies, or moves to another facility, for whatever reason. This means people are waiting months or (more likely) years for a placement. Misericordia, the most sought-after residential program in Illinois, I’ve heard, isn't even taking any more names because their wait-list is so long. Supposedly, people at the far end of the list may be waiting 20 years for a vacancy. The parents or legal guardians may die before their disabled dependent gets a home. In fact, it’s common, sadly. In such cases, the State steps in, assigns the dependent a public guardian and they move the person into any nursing home accepting Medicaid that has a bed open. I’ve heard of some people being placed in homes that are hundreds of miles from where they were, meaning any family or friends still living might never visit. These are really tragic situations.OTOH, people who are lucky get their adult child placed somewhere of their choosing while they are alive, giving them an opportunity to find higher-quality facilities for their loved ones and be present for their child’s transition into the care setting. This makes a huge difference.We were lucky. We knew someone who pulled some strings for us and we found a placement for our son not long after he completed his public education. Things started off pretty good, but their were some personnel changes and the quality of the facility suffered for it. We weren't satisfied with the care he was getting, so we put in applications to some other facilities and, just recently, we heard from one that offered us a vacancy. He’s been in placement about three years, so we were very lucky. We moved him in late October and it’s been going well. We’re pleased and he seems very happy. I wish everyone with a disabled loved one were as lucky.I wish the general public was more aware of the plight of disabled adults and their anxious families. I think if they did, more would be more sympathetic and less begrudging of taxpayers’ money that funds these services. I’ve heard some comments from people, criticizing the families of the disabled for putting the person on Public Aid and turning them over to strangers to care for them. Very few of these families have the resources necessary to pay for these services, and even the most devoted and loving parents can't provide the demanding challenge of day-to-day care indefinitely. Our bodies grow old and, ultimately, we all die. My husband and I are nearly 40 years older than our son. Despite his disability, he’s in excellent health and there's a good chance he will outlive us. We’re not foisting him on to public-funded caregivers because we're lazy or selfish. Not only can't we remain daily caregivers to him, but we want him to be comfortably situated and feeling secure in his life while we are still here. We won't have to be worried sick over what will happen to him after we die.The job of direct-care for the disabled is a hard one, and the pay to such heroes is appalling. In Illinois, the salary of direct-care-providers in 24/7 settings is a paltry $9.60 per hour! The facilities have no ability to pay their staff more, as this is what state legislators have budgeted for these jobs. Administrators don't have the dollars to increase their DCPs pay. These hard-working employees haven't had a pay increase since 2006, if you can imagine that. It's obscene. Bruce Rauner, our governor who happens to be a billionaire with no disabled family members, has vetoed all proposals for greater budgeting for these services, and, additionally, he wants legislators to approve his proposed budget that would cut funds to agencies like the one operating my son’s residence by a shocking 12%. We saw a statement issued by the administrators of the facility where our son was living previously, informing us this would slash over 800 million dollars from their operating budget. I probably don't need to tell you this would be catastrophic for these agencies and their clients. Legislators have been deadlocked well over a year in a stalemate over Illinois’ state budget. The stalemate has wreaked havoc on a wide scale with public-funded services, and there’s no light at the end of the tunnel. I lie awake in bed some nights worrying over all this, wondering how it will turn out and if some miracle will come along to rescue this miserable situation.Now there's a new presidential administration coming to the U.S., and louder and louder rumblings are being heard of eliminating Medicaid, Social Security and Medicare from many public servants supporting the president-elect. You can probably guess I’m scared to death over what will happen.This is no doubt way more than you asked or wanted to know, but I thank you for asking the question, giving me the opportunity to bring to light in a public forum the hardships families like mine must endure. The public needs to know about this.

Please read this important news article from today, and then read my post, immediately below, about what I learned “the hard way.”New Court Filing Argues the State's Guardianship System Puts the Disabled at Risk Posted By Sanford Nowlin on Mon, Apr 16, 2018 at 4:05 pmThomas Coleman (left), appearing on a talk show aired by the Arc of Riverside County, said failings in the guardianship system put the disabled at risk of exploitation and abuse.A group that advocates for the rights of the disabled has filed a class action complaint with the Texas Supreme Court arguing that the state's adult guardianship system violates parts of the Americans With Disabilities Act.The Spectrum Institute, which made similar court filings in Missouri and Washington, says Texas' state-appointed attorneys are often unable to adequately represent people placed in guardianship — typically those with mental impairments that prevent them from looking after themselves. What's more, attorneys may have financial incentive to aid probate judges at the expense of the people they're representing, according to the filing.Officials with Texas Health and Human Services, which administers a state guardianship program, declined comment on the filing since the appointment of attorneys is a court function."In many cases, someone in the prison system has more rights to make decisions about his own life than someone in guardianship," said Thomas Coleman, Spectrum Institute's legal director. "He can make decisions about his own medical care or about his finances. In many cases, these individuals cannot. That makes them especially vulnerable."Without adequate court representation, disabled people face the risk of exploitation, abuse and neglect at the hands of their caretakers, Coleman added.Currently, 54,000 Texas adults are under guardianship in the state and more than 4,500 cases are filed annually, according to Spectrum Institute. The majority of people under guardianship in the state have intellectual or developmental disabilities, but some are seniors experiencing cognitive decline. Both populations are expected to grow over coming years.The population of Texas seniors has increased more than 19 percent since 2012 to 3.4 million.(Note: The Guardianship Nightmare is in almost all the 50 states. Florida, so far, has taken no action and ignores all of the guardianship victims.)

I can answer this one because it’s the situation I have with my son, who is now 25. He suffered a brain injury shortly after he was born and it became apparent pretty quickly that he was going to be seriously disabled, physically and cognitively. When he “aged out” of the public education system, at 22, we had a dilemma. There was no longer anything to occupy him with his days, and his dad and I were getting too old to continue providing daily care. We had researched it, so we knew there are facilities that provide care 24/7 and these are paid for by Medicaid, supplemented by Social Security. The parent must go to court to obtain legal guardianship for the adult child, then apply on the child’s behalf for Medicaid and Social security. There is no “spend-down” requirement for Medicaid in such a situation because parents are not required legally to support a child after age 18.The care facilities available to the developmentally disabled range from standard nursing homes to specialized care/living facilities. The terrible truth, however, is there are not enough vacancies in these settings to accommodate all the people needing residential care. In my home state, Illinois, I’m told there's something like 25,000 individuals waiting for an available vacancy in residential care settings. Their legal guardians must apply to these places, then go on a waiting list until a vacancy opens. Vacancies become available when a resident dies, or moves to another facility, for whatever reason. This means people are waiting months or (more likely) years for a placement. Misericordia, the most sought-after residential program in Illinois, I’ve heard, isn't even taking any more names because their wait-list is so long. Supposedly, people at the far end of the list may be waiting 20 years for a vacancy. The parents or legal guardians may die before their disabled dependent gets a home. In fact, it’s common, sadly. In such cases, the State steps in, assigns the dependent a public guardian and they move the person into any nursing home accepting Medicaid that has a bed open. I’ve heard of some people being placed in homes that are hundreds of miles from where they were, meaning any family or friends still living might never visit. These are really tragic situations.OTOH, people who are lucky get their adult child placed somewhere of their choosing while they are alive, giving them an opportunity to find higher-quality facilities for their loved ones and be present for their child’s transition into the care setting. This makes a huge difference.We were lucky. We knew someone who pulled some strings for us and we found a placement for our son not long after he completed his public education. Things started off pretty good, but their were some personnel changes and the quality of the facility suffered for it. We weren't satisfied with the care he was getting, so we put in applications to some other facilities and, just recently, we heard from one that offered us a vacancy. He’s been in placement about three years, so we were very lucky. We moved him in late October and it’s been going well. We’re pleased and he seems very happy. I wish everyone with a disabled loved one were as lucky.I wish the general public was more aware of the plight of disabled adults and their anxious families. I think if they did, more would be more sympathetic and less begrudging of taxpayers’ money that funds these services. I’ve heard some comments from people, criticizing the families of the disabled for putting the person on Public Aid and turning them over to strangers to care for them. Very few of these families have the resources necessary to pay for these services, and even the most devoted and loving parents can't provide the demanding challenge of day-to-day care indefinitely. Our bodies grow old and, ultimately, we all die. My husband and I are nearly 40 years older than our son. Despite his disability, he’s in excellent health and there's a good chance he will outlive us. We’re not foisting him on to public-funded caregivers because we're lazy or selfish. Not only can't we remain daily caregivers to him, but we want him to be comfortably situated and feeling secure in his life while we are still here. We won't have to be worried sick over what will happen to him after we die.The job of direct-care for the disabled is a hard one, and the pay to such heroes is appalling. In Illinois, the salary of direct-care-providers in 24/7 settings is a paltry $9.60 per hour! The facilities have no ability to pay their staff more, as this is what state legislators have budgeted for these jobs. Administrators don't have the dollars to increase their DCPs pay. These hard-working employees haven't had a pay increase since 2006, if you can imagine that. It's obscene. Bruce Rauner, our governor who happens to be a billionaire with no disabled family members, has vetoed all proposals for greater budgeting for these services, and, additionally, he wants legislators to approve his proposed budget that would cut funds to agencies like the one operating my son’s residence by a shocking 12%. We saw a statement issued by the administrators of the facility where our son was living previously, informing us this would slash over 800 million dollars from their operating budget. I probably don't need to tell you this would be catastrophic for these agencies and their clients. Legislators have been deadlocked well over a year in a stalemate over Illinois’ state budget. The stalemate has wreaked havoc on a wide scale with public-funded services, and there’s no light at the end of the tunnel. I lie awake in bed some nights worrying over all this, wondering how it will turn out and if some miracle will come along to rescue this miserable situation.Now there's a new presidential administration coming to the U.S., and louder and louder rumblings are being heard of eliminating Medicaid, Social Security and Medicare from many public servants supporting the president-elect. You can probably guess I’m scared to death over what will happen.This is no doubt way more than you asked or wanted to know, but I thank you for asking the question, giving me the opportunity to bring to light in a public forum the hardships families like mine must endure. The public needs to know about this..