#developmentalal disability

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Adults with intellectual and developmental disabilities are ADULTS. Not eternal children

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if you’re autistic (even if you’re white, able to mask and fully speaking) you’re much closer to people with intellectual and developmental disabilities than you ever will be to neurotypical society. Include people with I/DD in your activism. Don’t separate yourself from us. I’d go as far as to say all autistic people have a developmental disability. You don’t have to identify that way, but really think hard about why you’re choosing not to. Autism is a Developmental Disability and and by separating yourself from intellectual and developmental disabilities (I/DD) you are throwing autistics with higher support needs and autitistics with intellectual disabilities under the bus. (Signed developmentally disabled autistics without ID who are considered developmentally disabled by the state)

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I feel like a fraud. I regularly do disability advocacy and have done multiple presentations some in front of hundreds of listeners about intellectual and developmental disabilities (which autism is included under), but I still can’t advocate for myself when it counts. I frequently need to seek emergency care either for my physical disabilities or severe mental illness. When this happens I am completely reliant on AAC. This isn’t a bad thing as it means I’m able to communicate, but it makes medical care so much more difficult. But even with AAC I struggle to communicate with doctors. And I am overly compliant with them to the point of causing myself harm. For example not fighting back when people say I need to go to psychiatric inpatient even though I know they are unable to provide me adequate care as an autistic person and usually further traumatize me. Or not pushing back against an unsafe discharge where I was having constant tremors that temporarily improved with medication but returned immediately when I got home. I talk a big game about how people with developmental disabilities need autonomy and deserve to be listened to. But I can’t even speak up for myself. Logically I know this isn’t my fault and a part of my disability, but I feel very ashamed that I can’t do the thing people listen to me for in my real life when the consequences are immediate.

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This Disability pride month believe people with intellectual and developmental disabilities about our transness. We aren’t “too disabled” or “confused” or anything else. We’re people and we can make decisions about our bodies and identities.

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Disabled people deserve support workers that let us make our own decisions about how and when we do things. It’s our life, not theirs. We deserve choice, including the ability to do anything other adults do. We deserve the choice to make mistakes.

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I wrote a letter to my state legislators and I want d to share it here because I’m very proud of it.

My name is Perri and the intellectual and developmental disability waiver is a very important issue to me. I am autistic and have been on the waiting list for the I/DD waiver for three years. If nothing is done about the waiting list I will be waiting seven more years for crucial services that would help me live in the community

All adults have the right to choose where they live. That includes adults with intellectual and developmental disabilities. Without home and community based services provided by the waiver, my right to choose where I want to live is extremely limited. I am currently unable to live completely independently because without any support I stop eating regularly, taking my medication, and doing basic self hygiene as often as needed to maintain cleanliness. Not taking my medication as prescribed makes it extremely difficult to maintain safe behaviors. When I tried living apart from my parents these unsafe behaviors became so unmanageable that I was hospitalized within the first two months of leaving my parents home. When I am very overwhelmed or anxious I self injure by hitting my head and biting or scratching myself. Even though I need support to stay safe and live in the community I still deserve to have as much choice and normalcy as possible for me.

I’m a twenty-one year old adult and I want to have the same adult experiences as non disabled adults. I want to live in my own apartment. I want to go out and do fun things without my parents being in my business. The same wants that non disabled adults have are often the same wants of people with I/DD. We long for independence, freedom, belonging and relationships just like people without disabilities do. The main difference is the support we need to achieve these things. That’s where home and community based services come in.

Home and community based services are a group of different services designed to help a person who is determined to need a nursing home level of care after going through an eligibility process. The services that make up home and community based services are varied and are tailored specifically to the needs and goals of the individual receiving care. The services provided can include day services, residential services, PCA services, respite, supportive employment, and case management. These services allow people with I/DD to live in the community with their goals and preferences in mind. The positive effects of these services in the lives of people with I/DD cannot be overstated.

Day services are programs where disabled adults can go during the day to socialize with other people with I/DD while receiving appropriate physical and mental support. These programs typically include learning life skills and doing fun things in the community. They also operate from Monday through Friday during the day with similar hours to nine to five employment. This can provide extra support for someone who is a primary caretaker who works because they are able to leave their loved one during the day without worrying about their safety or the care they’re receiving. This can significantly help families have peace of mind and avoid caregiver burnout. Another option for services are residential services.

Residential services are services where people with I/DD live somewhere in the community that is managed by a service provider, usually with round the clock supervision. Some examples of residential supports are group homes and apartments that are owned by a service provider and have staff that work there to support people. Having access to residential supports is very important for people with I/DD that have high medical and behavioral support needs. Sometimes individuals have behavioral needs that make it unsafe for themselves or others to live in the family home. Without residential supports these people would most likely need to be placed in a state hospital or other institutional placement.

Personal care attendant services also called PCA services are when a paid support person comes and gives care in the person's own or family home or the community. This allows a person to receive support in the environment where they are already comfortable. Staff can help with various things like cooking, hygiene and going with the person in the community for grocery shopping and other errands. There is also an option for people to direct their own care and hire their own support people if that works best for them. This gives people more control in the process of receiving care. Support people often support people in very intimate moments including showering and toileting, so having trust in your support person is critical. Self direction allows people to choose their workers and hire people they are comfortable with. PCA services allow people to live where they want and have choice over their care that may not always be available in more restrictive settings. But just because someone has significant disabilities doesn’t mean that PCA services aren’t for them.

Respite services offer short term care for people with I/DD to give the primary caregiver a break from caring for the person with I/DD. This care is for a very short period like during the day one day or overnight for a few days. This allows parents or other unpaid caregivers to take time for themselves to do things that they need. A caregiver may use the time to do errands that are difficult to do with the person with I/DD. They may have a date night or similar social engagement . They might even rest because they are so overwhelmed and need a break. Respite is a safe place for their loved one with staff trained to support people with I/DD. Even the most dedicated supporters of people with I/DD need breaks for their own physical and mental health. Preventing burnout of both paid and unpaid caregivers is important for people with I/DD. Sudden and frequent changes in caregivers can be very stressful.

Supportive employment services provide support for people with I/DD to access competitive employment in the community. Many people with I/DD want to work in the community and make money, but are unable to maintain a job that pays minimum wage or above without certain support due to their disability. Supportive employment typically includes a support person helping with social aspects of work like communicating with supervisors, staying on task, and cuing for the steps the person needs to complete. The person providing supportive employment services does not perform the work for the individual with I/DD. Instead the person supports the person with I/DD to perform the work themselves. Having a job and earning money can be very important for people with I/DD. It can give them extra spending money, a schedule and a sense of accomplishment. Some people with I/DD can be very successful in competitive employment with the correct support.

The final support provided by the I/DD waiver is case management. Navigating support systems is incredibly difficult even for people without I/DD. A case manager helps people navigate the I/DD system and assists in filling out paperwork and coordinating waiver services. The case manager also works with the person to develop a person centered plan to make sure that the services they are receiving are in line with their wants and goals. The case manager is the person who helps advocate for people with I/DD and makes sure all the complex parts of the I/DD system are working to support the individual like they should be.

All of these services are vital for the health and independence of people with I/DD. That’s why I strongly urge anyone reading to support initiatives and policies focused on ending the I/DD waitlist. Kansas Council of Developmental Disabilities suggests a plan to fund five hundred new spots on the waitlist and reduce the cap on the waitlist even further to thirty-eight hundred slots. Another way we can reduce the wait is by investing in the new community support waiver that would provide services for people who need less support to free up space for those who have high support needs on the I/DD waiver. We are also working towards increasing funding for people who work with people with I/DD to reduce turnover. These actions would be a huge step in the fight to eliminate the wait for Kansans with I/DD. Because everyone has the right to live in the community. Let Kansas with I/DD access the same rights as every other adult. End the wait!

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AAC users don’t have the option of passing as non disabled when we’re using AAC. We’re visibly disabled, and often visibly developmentally disabled. Especially full time AAC users, but even the most independent part time AAC user is still visibly disabled when using AAC

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Hi!

I'm not officially diagnosed as autistic but I am on the spectrum from what my parents and doctors have told me. What does that make me?

You can call yourself whatever you want. You can literally just say you’re autistic. Do things that autistic people do to accommodate ourselves. Try out different supports like sensory aids or aac. You don’t have to prove you’re “disabled enough” to deserve them. There’s no such thing as disabled enough. If a tool helps you you’re disabled enough to use it. The main benefit of getting a professional diagnosis written on paper is for government services and formal accommodations in a university or workplace. So a paper diagnosis may make you eligible for certain supports if you qualify. These are things like disability payments and home and community based services. Home and community based services help disabled people live outside of hospitals and nursing homes. They might be group homes, paid caregivers, or day support which is a place people can go during the day for supported socializing and learning skills. Accommodations in the work place or college are adjustments so a person with a disability can succeed in school or work.