…and What Can Happen if You Don’t Have It!
You have worked for years to make sure your autistic son is comfortable in his lovely suburban group home. He gets all his favorite foods, plenty of exercise, lots of outings and has his own pool table in the basement. On a sunny June day your son’s roommate has a medical emergency, and personnel are in and out of the house. So is your son. He goes for a walk by himself, down the usual path he takes with his aide. A neighbor’s new dog comes up and barks at him. Startled, he waves his arms and yells obscenities. People look out the window, and some passing kids on bikes laugh and yell at him. He makes a move to chase them, and the next thing you know, a police car arrives. The officer attempts small talk, and gets an unusual response. He exits the car and approaches. Your son, always fascinated with cop shows, sees the gun in the holster and wants to touch it. The next thing he knows, he is face down, handcuffed, and resisting arrest. When you get the phone call from the group home, you rush to the police station to calm your son and explain his situation. You are told you cannot see him, as he is over 18 years old and suspects are not allowed visitors. You can only imagine what is happening to him in the holding cell in the presence of actual criminals, and you hope like crazy he does not have a meltdown if the guards try to move him or there are any sudden noises. He has no guardian.
Your son is high functioning, has a spotless behavior record and is enrolled in college. You think that all the work you have done together to help him overcome his disability has paid off. All is good in both your worlds. He phones a local corporation as directed by his professor, inquiring about internships. He cannot get the information he wants in a timely fashion and gets caught in an autism “thought loop.” He calls repeatedly, becomes upset and says threatening things. One year later, he is incarcerated at a state prison. Your son was never violent, he never physically met his accusers, his perseveration frightened the person who took his calls, and the corporate lawyers handled the rest. While an inmate, he has been tased, hit over the head, and otherwise abused by jail personnel because, due to disability, he cannot filter his comments. He has celiac disease but not a proper diet so experiences bleeding. He cries every day and asks when he can go back to college. His life is over as far as you can see it. He has no guardian.
Your daughter is an amazing, gentle, talented writer and artist. It is your hope that she will make money in this regard. You live in a nice house in a cul-de-sac next to the woods; it is a beautiful and safe place. She will inherit the house; she is able to manage her life, can walk to the store, and can handle her checking account, pay bills, and cook. You have done all you can to educate her and make her capable of living virtually independently. You are there. Many years later, following your sudden decline and death from early onset Alzheimer’s, she lives alone in the house, walking through the woods at times to get food from the cheapest store. She writes all day and illustrates her stories at night. She keeps to herself, as she always has, so nobody ever knows that there is a 3’x7’ hole in the garage door she walks through sometimes (and so can anyone else.) She has run through all the cash left from life insurance. She paid all the bills for three years, and now utilities are being disconnected one by one. Taxes are owed on the house you left in your will (which she cannot find). The sewer backs up frequently in the basement. Her cousin always knew her as “that one who doesn’t like to be bothered,” but he still leaves her $20 from time to time at the bottom of her steps because he is unable to climb them. She is proud that she can live on $10 a week, that she saves water in containers to cook with, or wash her hair in the sink in case water services get turned off again. She has never had welfare, social security, or a job. She is entitled to SSI or SSDI, but even if she knew, she doesn’t know how to apply for it. To the system, she is nonexistent. Your daughter is now 61 years old, and in great physical shape when she has enough to eat. Social security tells us there is a 120-day waiting period to determine her case, and DPW requires her to get herself to the office in person, respond to interview questions, and then get a psychological evaluation, then wait even longer to get help. She could live another 20 or 30 years – but how? No guardian.
You may need a whole pound of prevention to avoid these actual scenarios! Many families living with autism or Asperger Syndrome need to get limited or full (plenary) guardianship, regardless of perceived ability level, and regardless of worries of offending the adult child. Temporary hurt feelings or misunderstandings can ease, while permanent legal, physical, or financial trouble often cannot. The guardianship process should start at age 17½ to give adequate time prior to the age of 18 (“the age of majority”) when legal parental oversight ceases. If guardianship is NOT obtained:
- and the adult-aged child moves into a facility that assumes guardianship of residents upon placement (public or private large residential facility, supervised apartment, shared living or assisted living facility), that organization or service provider can get full guardianship, and primary control of every aspect of your son’s or daughter’s life;
- parents will have to combat a facility’s legal team for any rights to information, treatment, medication, placement, discharge, or finances, and fight – expensively – to get guardianship of their own child;
- your son or daughter can fall easy prey to new “friends” who offer housing, food, cigarettes, parties, sex, and freedom from parental authority…and in return take their disability or other checks, prescription medications, and otherwise abuse and harm your child. This has led to illness, injury, unimaginable deprivation, even death;
- your son or daughter, encountering any trouble with the law, will still be given only one phone call;
- a judge, seeing that the person has no guardian, must assume competency and that the person has complete understanding of right from wrong;
- a judge will be much less likely to “go easy” on a person who is competent, as opposed to a person whom another judge, via the guardianship process, has declared incompetent (or partially incompetent). Disabled people without guardians get regular prison sentences every day. There is no manifestation of disability hearing. Once convicted, they are a criminal. Period.
Here are some guardianship facts. (For a great explanation of the many aspects of Pennsylvania guardianship, download this PDF document.)
- Parents or other concerned parties need to ensure that they have major decision-making roles as long as possible, and arrange for legal transfer of these in their absence.
- Guardianship provides true monitoring, enabling guardians to visit and assure the well-being of their loved one in or out of any facility or setting where he or she receives services.
- Without guardianship, you have no rights to visitation, treatment or other records, medications, meetings, finances, leases, loans, contracts, or anything else regarding your son’s or daughter’s special needs.
- Limited guardianship can assure that you maintain oversight in the specific areas you arrange, leaving the adult-aged child free to make his or her own decisions in other areas.
- Any person with a guardian maintains many rights, such as the right to vote, to have a bank account, to have a job, and others as may be ensured and safeguarded by a caring guardian.
How to raise the issue in cases of “higher functioning” people:
“Everyone needs help sometimes. You are an intelligent person and you have always been really smart about coming to me to ask about things like doctor’s visits and job applications. Let’s make sure that no matter where you live or what you do, that I can always help you with things like that. And for the times when I am not available, we can make a contract with Aunt Jen to take over for me. We want to make sure that nobody else can lead you into making a mistake in those areas. Nobody else loves you as much as we do!” Regardless of ability level, everyone dealing with autism or Asperger’s syndrome needs to fully investigate the various options and safeguards of guardianship?