All I can do is document and make complaints and ask for help

[00:00:10]Thank you for calling the Adult Protective Services help >> is being recorded.

[00:00:14]>> Please stay on the line and someone will be available to answer your call shortly. Keep in mind that if you choose to hang up and call back, you will forfeit your current position in the queue. Thank you for your patience.

[00:00:25]>> Your call is now first in line and will be answered by the next available represent >> I need help with finding a doctor.

[00:01:29]I need help with my teeth are hurting me.

[00:01:33]I can't get the medical care because I am told by my doctors I don't have capacity to make decisions.

[00:01:48]>> And who told you say who told you did not have the capacity to make decisions?

[00:02:04]>> Tell me what that is.

[00:02:10]>> I need help with my behavior.

[00:02:17]>> What are your behaviors?

[00:02:45]>> Wandering, yelling, and hitting my head, and throwing things.

[00:02:57]>> Got you.

[00:02:58]Do you have any type of formal supports at all? Like any type of caregivers or any staff at all handy that comes in to help at all?

[00:03:09]>> I don't like change and sensory issues.

[00:03:13]Yes.

[00:03:19]>> How often does somebody come?

[00:03:44]>> My caregivers don't help me with the things I need help with at times, like routine and activities.

[00:03:54]>> I got it.

[00:03:57]Who um who is your agency? Is that something that they just don't provide?

[00:04:02]>> I get 60 hours of care.

[00:04:08]>> 60 hours?

[00:04:09]>> No.

[00:04:09]>> From who? From the agency?

[00:04:15]>> 168.

[00:04:18]>> Oh, 168.

[00:04:19]>> hours >> And what are they helping you do?

[00:04:31]>> Sunrise >> Sunrise Home Care >> Okay.

[00:04:36]And now when they come in, are they assisting with uh like your ADL, like you getting showered, toileting, that type of thing, making sure you have meals? Is that Is that what they're doing for you?

[00:04:50]>> Yes.

[00:04:51]>> Okay. So you need this added and I got that. Yeah, I I totally understand where you're coming from.

[00:04:59]Okay, I got Right now though, everything like your health is going well, you're eating well, you are getting showered, they're helping you with your medications.

[00:05:12]Um anything like that that's being neglected at this point, Andy?

[00:05:18]>> My caregivers don't have my behavior.

[00:05:21]They can't help me with this because of the limitations.

[00:05:26]>> Oh, they're I understand. They're not um They're not skilled. They're coming in as aides, correct? And they're not skilled workers, correct?

[00:05:38]>> Yes.

[00:05:40]>> Perfect. Got it.

[00:05:46]I'll make got for you. Thank you.

[00:05:48]Okay.

[00:05:50]And do you have anything else that you want me to add in there?

[00:05:53]>> my medication I need a nurse to fill my medication box.

[00:05:58]>> Mhm.

[00:06:03]Perfect.

[00:06:06]>> I don't have a nurse.

[00:06:09]>> Okay.

[00:06:11]And that sound like that's exactly what what your next step is, what you're needing.

[00:06:16]Okay.

[00:06:18]All right. Let me get that.

[00:06:20]And do you have anything else that you want me to put in the report? We have um follow-up questions that is going to gather a bunch more information. Um but I don't want to jump into those with you.

[00:06:30]Go ahead.

[00:06:30]>> My caregivers are PAS workers, not DPS workers.

[00:06:36]>> Mhm.

[00:06:37]Got it.

[00:06:42]Got it.

[00:06:46]Okay.

[00:06:48]And do you feel you're in a life-threatening situation?

[00:06:53]>> I need a colonoscopy.

[00:06:59]>> I'm sorry. What was you need what?

[00:07:05]>> Colonoscopy.

[00:07:11]>> Okay.

[00:07:15]Do you feel you're at risk of being socially isolated? Are you getting out at all?

[00:07:21]>> Colon cancer screening.

[00:07:25]>> Mhm.

[00:07:31]>> No, I need help with socializing.

[00:07:37]>> Okay.

[00:07:38]>> Neglect, in a professional and legal context, it's generally defined as the failure to provide the goods, care, or services that are essential to maintain an individual's physical or mental health.

[00:07:55]When these essential needs are not met, it creates a clear and serious threat to the individual's safety and well-being.

[00:08:04]Because you are navigating the Pennsylvania system, it is most helpful to look at how this is defined under Pennsylvania law.

[00:08:14]The legal definition, Act 7B of 2010 in Pennsylvania. Act 7B of 2010 provides a specific legal definition for neglect regarding adults. The failure to provide for oneself or the failure of a caregiver to provide goods, care, or services essential to avoid a clear and serious threat to the physical or mental health of an adult.

[00:08:42]The role of environmental factors.

[00:08:45]Pennsylvania law also recognizes an important nuance regarding environmental factors. The term neglect does not include environmental factors that are beyond the control of an adult or the caregiver, including but not limited to inadequate housing, furnishings, income, clothing, or medical care.

[00:09:11]This is a critical distinction for your situation.

[00:09:15]When you argue that your caregivers cannot provide behavior supports or communication modeling because their waiver, CHC, contractually excludes those services, you are highlighting an environmental factor.

[00:09:33]This means that while the lack of care is neglect, the responsibility for that neglect may be placed on the system them coast, the state waiver requirements, and the county administrative silos, rather than solely on the individual caregiver.

[00:09:53]It proves that the environment you are being forced to live in is structurally incapable of meeting your essential needs when you are navigating the health care system. The terms social neglect and behavioral health neglect are often used to describe specific systemic failures, rather than just personal experiences.

[00:10:17]Because you are documenting these issues for the Office for Civil Rights, OCR, and CMS, it is vital to define them in a way that highlights how the system is failing you.

[00:10:32]Social neglect in the context of disability services, social neglect is not just about being lonely.

[00:10:42]It is the systemic deprivation of the supports necessary for community participation and social integration.

[00:10:51]The definition, social neglect occurs when an individual with a disability is physically present in the community, but is denied the specific documented supports, such as trained staff or communication devices required to engage with others, build relationships, or participate in meaningful activities.

[00:11:17]Behavioral health neglect, this is the failure to provide medically necessary behavioral supports or therapies required to stabilize, manage, and treat symptoms related to a developmental or disability.

[00:11:34]The definition, behavioral health neglect happens when a system refuses to provide the specific interventions like ABA, behavior modeling, or skill building that are documented as necessary for an individual's safety and autonomy.

[00:11:54]This often occurs when systems wrongly assume that behavioral health only applies to mental illness and ignore the behavioral stabilization needs of autistic or intellectually disabled individuals.

[00:12:11]How it applies to you, you have documented needs for behavioral redirection and skill building.

[00:12:19]Young Co, Pennsylvania Health and Wellness, admitted on the record that they do not cover behavioral health for your needs and that your current staff is not licensed to to provide it.

[00:12:33]Discharging you from clinics like Safe Harbor because you don't have a mental illness whilst simultaneously denying you the developmental support you do have is a form of behavioral health neglect.

[00:12:51]People do not respect my disability needs.

[00:12:56]It is too hard.

[00:12:59]Too much.

[00:13:00]I have a hard time choosing what I want to eat for my meals.

[00:13:06]I need help choosing the activities I do in the daytime.

[00:13:11]I know what I like and don't like.

[00:13:14]Too many choices.

[00:13:17]To take care of my medical, legal, and financial is not something I can handle.

[00:13:25]Endangerment and discrimination by service professionals by multiple private and government agencies has repeatedly engaged in disability discrimination by holding me to the standard of a neurotypical adult.

[00:13:41]When I call for help often while wandering or without caregiver, workers refuse to accommodate my cognitive and sensory limitations.

[00:13:52]The illusion of competence and we weaponize scripting because I use scripting and verbal masking as survival tools to recite my legal rights such as Act 70 and 302 laws. Service professionals falsely assume I have the receptive language and executive function to stay safe.

[00:14:15]They confuse my ability to speak with the ability to survive independently.

[00:14:22]See speech and audiology reports.

[00:14:25]Instead of recognizing a neurological meltdown, which is a biological reaction to severe stress where I lose control and my sense of danger, they label my actions as manipulative temper tantrums.

[00:14:42]Encouraged doing unsafe behaviors, service professionals actively encourages me to engage in unsafe behaviors by telling me I'm an adult who can make my own choices even when I explicitly tell them I'm in danger.

[00:15:00]They have repeatedly given me permission to run away and sleep on the streets in freezing weather.

[00:15:08]To a neurotypical adult, crossing the street or going outside might be safe, but for me, it is life-threatening.

[00:15:18]Argumentative and abusive gaslighting me, you didn't get your way. You want your way. You did not like what I said.

[00:15:26]You do not accept the reality. You are mad that you can't get help wiping and being coddled. They bully me into unsafe behaviors due to my being aware what they are doing is illegal and I am disabled and they hold the power to help me as college educated working able adults whose job title is to diagnose, treat, and provide services to allow me to be healthy, prevent disability, prevent illness, prevent death, and to manage my symptoms.

[00:16:02]Traffic endangerment. I cannot judge the speed or distance of oncoming cars and I have nearly been hit by vehicles multiple times.

[00:16:13]Sensory overload. I am highly sensitive to loud noises and bright lights, which causes me to freeze or panic near roads.

[00:16:24]Wandering and elopement. I have a medical diagnosis of goal-directed wandering toward roads and bodies of water.

[00:16:34]I get lost frequently and have a hard time communicating with my location to be found and taken to safety.

[00:16:42]Severe activities of daily living ADL deficits requiring 24-hour care. My medical records clearly state that I require 24-hour care to ensure my safety and well-being and to reduce the risk of self-injury or harm.

[00:17:01]I cannot take care of myself or be safe without 24-hour care due to mental disability.

[00:17:09]I lack the interoceptive awareness and cognitive ability to perform the following basic tasks.

[00:17:18]Incontinence and hygiene. I am unable to sense when I need to pee or poop.

[00:17:24]Nutrition and hydration. I cannot sense when I am hungry or full and I cannot tell when I need to eat.

[00:17:34]I easily get distracted by activities, lose track of time, and forget to eat, drink, or use the bathroom.

[00:17:45]I cannot sense when I am thirsty, which leads to severe dehydration.

[00:17:53]Medication management. I cannot remember to take my medications, as I forget them entirely.

[00:18:01]I do not know when to safely take my as needed medications.

[00:18:08]I take too many medications to keep track of and I cannot sort them or put them into a medication box safely. Basic living and safety. I cannot cook safely.

[00:18:23]I cannot shower properly.

[00:18:26]I cannot respond safely to emergencies, such as severe weather, power outages, physical injuries, illnesses, or fire alarms.

[00:18:42]>> Okay. So, in the I I have been typing this whole time. I got lots and lots of details going on there. That is absolutely wonderful. Can you tell me, just so I can wrap this up for you, what's What are your diagnoses, your physical and your mental health diagnoses?

[00:19:05]>> When say it?

[00:19:15]>> I need help with my behavior therapy doctor and permission to get my colonoscopy and oral surgery done.

[00:19:27]>> Okay.

[00:19:28]>> Unable to care for self.

[00:19:31]>> Okay.

[00:19:31]>> Unable to care for self.

[00:19:33]I'm diagnosed with >> Go ahead.

[00:19:38]>> Unable to care for self.

[00:19:41]Autism spectrum disorder level two.

[00:19:45]Intellectual developmental disorder mild.

[00:19:49]Developmental language disorder with impairment of receptive and expressive language.

[00:19:57]Wandering disease due to autism.

[00:20:01]Self-injurious behavior due to autism.

[00:20:06]Central auditory processing disorder.

[00:20:11]Sensory processing disorder.

[00:20:16]ADHD combined.

[00:20:19]Tourette's syndrome.

[00:20:22]Anxiety.

[00:20:25]Learning disability.

[00:20:28]Insomnia.

[00:20:31]Asthma.

[00:20:33]Pituitary deficiency due to Rathke's cleft cyst.

[00:20:40]Hypothyroidism.

[00:20:43]Hydrocephalus Type two diabetes with complication.

[00:20:52]Hypothyroidism.

[00:20:54]HTN hypertension.

[00:20:59]Incontinence without sensory awareness bowel incontinence IBS irritable bowel syndrome.

[00:21:11]GER, gastroesophageal reflux disease.

[00:21:17]Colorectal polyp detected on colonoscopy.

[00:21:22]Constipation.

[00:21:25]Morbid obesity.

[00:21:28]Lumbar stenosis.

[00:21:37]>> Do you Andy, do you use a wheelchair or a walker or anything?

[00:21:43]>> No.

[00:21:47]>> Got it. And just to verify, it doesn't sound like it, no drug or alcohol abuse, correct?

[00:21:53]>> Shower chair.

[00:21:59]>> Got it.

[00:22:00]>> No drugs.

[00:22:05]>> Perfect.

[00:22:07]And you're not oriented, you're not having hallucinations or suicidal ideation.

[00:22:25]>> I don't have those.

[00:22:28]>> Perfect. And the environment of Got it. The environment of your home, you have adequate utilities, there's no insect pests, garbage or trash, pet or animal problems.

[00:23:00]>> I have utilities, garbage or pests.

[00:23:05]>> Perfect. Do you live in a safe neighborhood? Are there any drugs, gangs, weapons in your neighborhood?

[00:23:16]>> My area is safe.

[00:23:20]>> And do you have anybody assigned a guardian, a power of attorney, or possibly a rep payee?

[00:23:59]>> I need help with this because I am told by a lawyer I only have a rep payee and need a guardian.

[00:24:07]>> Okay.

[00:24:10]Let me put that in there.

[00:24:16]Is anybody taking advantage of you financially, uh Andy? Like, um maybe taking over your bank account, anything missing that you're aware of?

[00:24:26]Okay, good to know.

[00:24:28]And then, Andy, I want to know who exactly are we identifying as Who's Who's responsible to provide these services that are that is not doing that?

[00:24:43]Who have you spoken with?

[00:24:53]>> I have no one to help with guardian is why I ask I am calling today.

[00:24:59]>> Okay.

[00:25:02]Got you. All right. So, I have all of that handy. I'll >> You're answering >> a question I'm asking answering.

[00:25:10]Adult Protective Services, my old service coordinator, PA Health and Wellness, the County Assistance Office, and um and um the Office of Long-Term Living, and the Office of Developmental Programs, those are the ones who are not helping me with getting the care I need.

[00:25:39]A nurse, >> I got you.

[00:25:40]>> behavior support, trained caregivers for DSP worker support, um uh the residential have and stuff so on and so forth.

[00:25:56]And guardianship.

[00:25:59]And finding me a doctor, a new doctor, and also the also um my caregivers, some of them have not helped me with keeping busy in the activities that I need help with that they can help me with doing.

[00:26:24]Oh god, there's a spider. Oh god, that's gross.

[00:26:29]There's a spider on my bed. Yuck.

[00:26:32]>> Oh, yuck. That is yuck. Okay. So, Andy, I got all of that. I'll go ahead and get this report done, and as I also you said at the beginning that you wanted to do a report, and you wanted to do a complaint as well.

[00:26:50]>> Yeah.

[00:26:51]>> Um >> It's been 2 weeks.

[00:26:52]>> this complaint Do you have any evidence?

[00:26:55]been two weeks complaining about the same thing.

[00:27:02]>> Okay.

[00:27:03]>> My doctors have reported this APS. My home care has reported this. My law enforcement has done so as well.

[00:27:16]>> Okay.

[00:27:19]>> Summarize is not summarize is not yes.