FAQs on COVID-19 Vaccinations for Brokerage Customers

 

Download a PDF of the slideshow  in English here.

Download a PDF of the slideshow in Spanish here.

Russian and Vietnamese translations will be posted shortly as well as an audio version of the FAQ.

People with Developmental Disabilities and their Families and Support Workers (PSWs and DSPs) can get the COVID-19 Vaccine now

COVID vaccines have been tested and proven effective and are arriving now in Oregon. We all have questions about how vaccines will get to all the people who need them. We gathered some information to share about the unfolding COVID-19 Vaccination Process. Our goal is to provide people with the most accurate information so that they can be healthy, safe and informed about the process.

The COVID-19 Vaccines are here and Oregon gets more doses each day. Oregon has a plan that says who can get the COVID-19 Vaccine. The plan puts people first who are at greatest risk of:

  • Getting COVID-19, or
  • Getting really sick with COVID-19.

There are 3 Phases to the roll-out plan and different groups within each Phase.

Adults and youth (age 16+) with developmental disabilities, their families and support workers are in Phase 1a.

Oregon is currently giving vaccines to all people who are in Phase 1a.

Brokerage customers, people who provide unpaid support in direct contact with them, and paid providers should be able to get the vaccine as part of Phase 1a-Group 3. Initially, these groups were going to be offered the vaccine in chronological group order. In an effort to get people protected by the vaccine as quickly as possible, the Governor and the Oregon Health Authority have opened the vaccine eligibility to all groups within Phase 1a at the same time.

Why would I want to get a COVID vaccine?

A vaccine is important to help stop the spread of COVID-19: Vaccines help your body grow its ability to fight off a specific disease, which keeps you healthy, protects our hospitals from overcrowding, and stops COVID spreading through the community.

1. It is a safe way to protect yourself from getting COVID-19: The vaccine development process is rigorous, with many trials, tests, and benchmarks that must be met. The vaccine has been tested on many thousands of volunteers from diverse backgrounds. Vaccines have a proven track record of fighting and even getting rid of disease.

2. It will protect others around you: As fewer people contract the disease, it gets harder for the disease to spread within a community. As a society, we need people to be vaccinated in order to get rid of COVID.

3. The vaccine will help us get back to “normal” faster: There is no cure for COVID for people who catch the disease. Vaccination is our best chance of reducing COVID infections to the point that the danger is low enough for people to return to normal life routines and activities.

 

Where and when can I get the vaccine?

Information on vaccine availability will be released by Local Public Health Authorities. This means that vaccine locations and procedures may vary somewhat from place to place across the state. As the vaccine is distributed and made available in your area, information will likely be shared on local media. Specific information will also come to you through contact from your Personal Agent. We do not yet know what the processes will be, but you may be asked to make an appointment, or there may be more public vaccination events in your community. When we know where you can receive a vaccine, we will call and tell you!

Who is eligible to get a vaccine now?

Phase 1a-Group 3 includes most people who use and interact with the DD service system. All people with an intellectual or developmental disability are now able to get the vaccine. The following people are eligible to get a vaccine now under Phase 1a-Group 3:

  • People enrolled in a Brokerage, Group Homes, Foster Care, or other service
  • People who have IDD but do not receive services
  • People who live with and/or provide care in close contact to a person who has an intellectual or developmental disability
  • PSWs and DSPs

How much vaccine is available right now?

Oregon does have a limited supply at the time of the drafting of this document, early in January 2021. This is why Oregon has created a roll-out plan. More vaccine doses are arriving regularly.

Do I have a choice about getting the vaccine?

Yes, most people will be able to choose whether or not they get the vaccine. Not everyone will choose to be vaccinated. Doctors may advise a very small number of people not to get the vaccine during the initial roll-out.

Note that it is legal for employers to require that their employees have this vaccination, and they can ask for proof of vaccination. Proof of vaccination may also be a requirement to travel to certain countries.

How do I know if the vaccine is right for me?

Your best source of personalized medical advice is your doctor. The vaccine is generally recommended as our best opportunity to avoid COVID-19 infection.

Though the vaccine development process included a wide variety of individuals and populations, there are a few small subsets of people who were not included as part of vaccine trials. Because there is not yet testing data to support vaccination for those specific sub-groups, they may not be encouraged to be vaccinated initially. If you have concerns, your doctor will be able to help you decide what is best for you.

For more general information, Oregon has provided many resources to assist you in your research, including:

COVID-19 Vaccine in Oregon
COVID-19 Updates
Office of Developmental Disabilities Services

How do I get the vaccine?

Information is coming out continuously about vaccine distribution. As of this publication, we know that local public health entities will determine how the vaccine is administered in each community around Oregon. This means that the answer to this question in Clackamas County may be different than it is in Coos County.

To find more information about your Local Public Health contact, you can go to Oregon Health Authority : Local Public Health Authority Directory : Technical Assistance for Local Public Health Authorities.

Please do pay attention to local media announcements and local information campaigns that share news about vaccine clinics and other ways to get the vaccine. Know that you are eligible now, and that means that any clinic or other avenue for getting the vaccine should be open to you.

What if I need help to get vaccinated?

Your Brokerage Personal Agent is here to help you navigate this process. We will contact you as information becomes available about where and when vaccines are available.

Your Personal Agent is not able to administer the vaccine, nor do
Brokerages have medically-trained personnel on staff. If you need support to get to a vaccination site, we will help as needed, which may look like: helping to schedule an appointment with you, helping to coordinate provider support, arranging transportation, etc. We cannot give you the shot, but we can help you get to someone who can.

What proof will I need to provide that I am part of Phase 1a-Group 3?

Based on most recent communication, you (or a supporter) will need to be able to state that you are in “Phase 1a-Group 3” and what category you fall into:

  • Person with an IDD diagnosis
  • Person providing support to an individual with an IDD diagnosis
  • Parent helping care for a child with an IDD diagnosis

 What if OHA moves on to the next phase and I miss my group?

People eligible during 1a can request a vaccine at any point in the process. You will not lose your spot in line. As OHA moves down the vaccine priority list, they open the opportunity up to more people without closing it to others.

What do I need to bring to my vaccine appointment?

You should be given specific information about this when you make your vaccine appointment. You will most likely need to be prepared to talk with your vaccination provider about:

  • What makes you eligible for vaccination (diagnosis of developmental disability, status as a person providing support,etc.)
  • Your medical conditions
  • All known allergies
  • Any previous experience with vaccine side effects
  • Your address/where you live

 What should I expect after I get the vaccine?

As is common with most vaccines, you may experience pain or discomfort after the shot as part of your body’s immune response. Side effects that have been reported with the COVID-19 vaccines include injection site pain, tiredness, headache, muscle pain, chills, joint pain, fever, injection site swelling, injection site redness, nausea, feeling unwell, and swollen lymph nodes.

The purpose of any vaccine is to stimulate an immune response from your body so that it can fight off infection threats as they occur. This immune response may cause some aches and pains, but it is all in the service of making sure that you are protected from the worst effects of COVID-19.

The vaccination process should include an observation period of around 15-20 minutes after administration to ensure there are no actual side effects, such as an allergic reaction. Such reactions are rare, but have occurred in a small handful of instances. If you know of any allergies that you have (or allergies that a family member getting the vaccine has), please make sure that you discuss those with your provider.

This vaccine requires 2 doses, about 3 weeks apart. You should be prepared to schedule a return visit. Please note that, while honoring this vaccination schedule gives you the best chance to develop the immunity you need, it is possible to get your second “booster” shot later than indicated and still experience the benefit.

Make a plan to get your second shot as prescribed, but do not give it up entirely if something gets in the way of that plan.

Will the vaccine give me COVID?

No, neither COVID vaccine will infect you with COVID. The two COVID vaccines approved to date work by directing your body to create a protein that looks enough like the COVID virus that your body is tricked, and develops antibodies to fight it. That builds your body’s ability to fight off the true COVID virus when you later encounter it, keeping you from developing an infection and getting sick.

How can I continue to keep myself and others safe after I get the vaccine?

We will all be asked to continue to take safety precautions after vaccination. Keep in mind that it will take a little while after you receive the shot for your body to grow its ability to fight off the COVID virus. The real measure of whether or not the vaccine is working is whether the disease is still moving from person to person in our communities.

Until the COVID infections rates, hospital capacity, and other indicators of community transmission go down, we will need to keep our masks on, keep our distance, and avoid indoor gatherings.

OPB Premieres “In The Shadow of Fairview” Documentary

“In the Shadow of Fairview,” a one-hour documentary examining the history of Oregon’s largest institution, premieres on OPB Monday, December 14th  at 9pm.

Independence Northwest’s Board of Directors President Linda Gheer is among several high profile self-advocates and former Fairview residents featured in the film. OPB has done an extraordinary job capturing a very difficult chapter in our state’s history while also illuminating the exceptional efforts and vision of Oregonians with disabilities, their family members, and community advocates.

From OPB: “Twenty years ago, the last resident left Fairview Training Center. For nearly 100 years, Fairview was Oregon’s primary institution for those with intellectual and developmental disabilities. Oregon is considered a leader at in-home and community-based services and supports for people with intellectual and developmental disabilities (I/DD). But it wasn’t always that way. For nearly 100 years, the Fairview Training Center housed thousands of Oregonians with disabilities. The facility opened in 1908 as the State Institution for the Feeble-Minded. Most of the first patients were transferred from the Oregon State Hospital for the Insane. For decades, residents were officially referred to as ‘inmates.’”

 

Governor Brown’s Two-Week Pause Affects Residents in Multnomah, Clackamas, and Washington Counties (November 11th through 25th, 2020)

The Oregon Office of Developmental Disabilities Director Lilia Teninty released the following notice on Monday November 9, 2020:

“As Oregon continues to have record-setting cases of COVID-19, Gov. Kate Brown announced a two-week pause on social activities in nine Oregon counties where community transmission is on the rise. The counties are: Baker, Clackamas, Jackson, Malheur, Marion, Multnomah, Umatilla, Union, and Washington. These pause measures will be in effect for two weeks, from Nov. 11 through Nov. 25. Details of the pause are in the Governor’s press release and include limiting social gatherings to your household, or no more than six people if the gathering includes anyone from outside your household.

For ODDS, this also means going back to baseline status temporarily for people who receive services in these counties. Effective Nov. 11, ODDS is implementing visitor restrictions of only essential personnel in group homes and I/DD foster homes. More detail is in the Residential/Foster Care Worker Guide.

All group employment and Day Support Activities (DSA) are also paused, unless they take place at an essential business or are provided to individuals who reside together in the same household. More detail is available in the Employment/DSA Worker Guide. If you are an employment or DSA provider who delivers group or facility-based services, please notify those you serve in those settings as soon as possible to tell them the service is paused for two weeks. Case Management Entities should also connect with providers in these counties and ensure providers are aware of this new guidance.

We realize how difficult this situation is for people with intellectual and developmental disabilities, their families and friends, as well as for providers and case management entities. Ultimately, we must take precautions to keep the health and safety of the people we serve at the forefront.

Providers and case management entities should also be aware that Oregonians with I/DD always have the choice to leave their home. ODDS guidance emphasizes that residential providers may not prohibit a resident of a home from leaving the home, nor can they deny re-entry to the home. Providers and case managers should help people to understand any risks of leaving the home, including offering alternative options. For instance, if a person who uses ODDS services chooses to go out (for work, essential services, recreation etc.), providers should help people understand any risks and support the person to make a plan. The provider can encourage the person to wear a mask and maintain physical distancing, and to thoroughly wash their hands when they return. The individual’s case management entity can get masks for them.

Thank you for your efforts to support people with intellectual and developmental disabilities and their families.”

2020 Wildfire Supports and Resources

The events of the week of September 7th, 2020 have been devastating. Independence Northwest is here as a support for the communities of Clackamas, Washington, and Multnomah counties.

We have just added a new resource page to our website: https://independencenw.org/fires/ This list of resources is by no means comprehensive, but we will continue to add to it as we get more information. If you would like to share resources with us or if you have updates to existing resources, please email larry@independencenw.org. Thank you!

CLICK HERE TO SIGN UP FOR PUBLIC ALERTS!

Black Disabled Lives Matter

This July, Starkloff Disability Institute presented an extraordinary two part presentation, Black Disabled Lives Matter.

The two-part series, out of St. Louis, challenges audiences to develop an understanding of how multiple identities – such as disability, race and gender expression – intersect to shape a person’s experience within the structures and systems of our society as well as within each of these communities.

Audience members were offered an opportunity to identify the power they hold in the workplace and community as well as actions they can take to be in solidarity with others. Participants will find resources for developing skills around identifying and challenging their own implicit biases.

The series is divided into two parts:

  • Part One: A National Outlook from Thought Leaders – Dr. Donna Walton and Janet LaBreck, leaders in the Disability Community, discuss the experiences of Black Disabled Americans and the impact multiple prejudices have on their lives.
  • Part Two: An Intimate View from Self-Advocates in Our Community – In part two, members of the Disability community  – including Aaron Owens, Brandon Morris, Rose Gelin, and Sharon Lyons – discuss their experiences as Black Disabled Americans and the impact multiple prejudices have on their lives.

Check out the newly-posted videos below:

 

Personal Protective Equipment for Personal Support Workers

As of April 27th, 2020, the Oregon Department of Human Services announced access to additional Personal Protective Equipment (PPE) for Personal Support Workers. Here is the new process for PSWs to obtain gloves and masks:

Personal Support Workers should submit a request to the Oregon Home Care Commission by completing an electronic form via SEIU’s website https://seiu503.tfaforms.net/622 or by emailing OHCC.CustomerRelations@dhsoha.state.or.us.

If you are sending an email request, you must include all of the following:

  • First and Last Name
  • Provider Number
  • Provider Type (Personal Support Worker)
  • Name of Case Management Entity (Independence Northwest Brokerage)
  • Number of customers you support in a week
  • Number of hours worked per pay period per customer (this is what they will use to determine how many gloves or masks they will provide you)
  • Type of PPE requested (masks or gloves)
  • Whether you would prefer to have the PPE mailed or if you would like to pick it up

Once you complete the process, the OHCC will notify you of available pick up times and locations or how the materials will be sent.

Read the full transmittal by clicking here.

From all of us at Independence Northwest, we’d like to thank you for the essential services you are providing our community at this time.

If you have any questions, please contact the Personal Agent(s) you work with at INW by calling 503-546-2950.

If You Get Sick, What Do Nurses and Doctors Need to Know to Communicate Best With You?

By Larry Deal, Executive Director

A little over a week ago, my father was hospitalized and put on a ventilator. Because of the COVID-19 outbreak, medics were unable to honor his choice of hospitals in South Florida and for ten days no outside visitors have been allowed into the hospital to see him.

My family’s story is just one of many playing out across the world as more and more people are hospitalized due to the COVID-19 outbreak. In many areas, hospitals aren’t allowing visitors to stay with adults who are admitted, due to an abundance of caution over the spread of virus. The decision makes good sense from a public health perspective – we all must understand the essential role we play in limiting potential spread – but it’s a pretty difficult experience when a loved one is ill and needs care. While my father’s health situation isn’t related to the virus, his care is being affected significantly by the pandemic.

Nothing is more essential than being able to communicate your needs in the midst of a crisis. If you or someone you care for were to need to communicate wants and needs without familiar supports in place, now is the time to create a backup communication plan. My sisters and I completed a Health Passport to have at our father’s side in this moment  and we encourage you to do consider doing the same. These documents have the power to humanize and illuminate those we care about and to express personal preferences in moments when those things can make all the difference.

As you continue to refine your safety plans during this heightened period, please consider including a communication document of some sort. Fill one out, keep it somewhere safe, and if you must seek medical attention, make sure it’s updated and at your side in case your usual supports aren’t. Oregon hospitals are doing what they can to honor choices in support and we recommend checking in with local hospitals to determine policies in your area.  Check out the communication resources we have pulled together in partnership with speech pathologist and INW board member, Corinne Thomas-Kersting. Huge thanks to her for this support.

If you have additional resources you’d like shared with INW’s customers, families, and networks, please send me a note at larry@independencenw.org. Thanks so much. I hope that you and your families are safe and well. If there’s anything at all we can do to support you, please reach out. We’re here.

Please visit www.independencenw.org/communication to find a healthcare passport for you or your family.

Essential Resources:

Stay connected by following us on Facebook or visiting us at www.independencenw.org/
If you know someone who should be added to our mailing list, please have them sign up here we’ll be sure to share information with them as well.

Curbside Rapid COVID-19 Testing Now Available

Curbside Rapid COVID-19 testing is now available.

Click here for full details.

How It Works

1. Schedule a Virtual Visit with a provider
If clinically appropriate based on CDC and state guidelines, our provider will schedule you for an in-person rapid COVID-19 test at one of our centers.

2. Follow instructions for your scheduled curbside appointment
Park in the designated area and wait for a provider to come to you for a swab test.

3. Receive your results in approximately 15 minutes
If your test results are positive, your provider will discuss next steps for care.

Priority will be given to exposed front-line medical personnel and other responders like firefighters and police.

What is the Rapid COVID-19 Test?

The Abbott rapid COVID-19 test was recently authorized by the FDA under an emergency use authorization in healthcare settings (although it has not been FDA cleared or approved). The rapid COVID-19 test provides results within approximately 15 minutes.
The test starts with taking a swab from the nose or the back of the throat, then mixing it with a chemical solution that breaks open the virus and releases its RNA.

Using the molecular technology from the Abbott ID NOW system, the mixture is inserted into an ID NOW box that has the technology to identify and amplify select sequences of the coronavirus genome and ignore contamination with other viruses.

Our team is well-equipped and well-trained for this method of testing, having already used Abbott’s ID NOW testing platform to perform rapid tests for flu and strep testing.

March 17, 2020: Important Coronavirus Notice from Oregon DHS for Customers and Families

March 17, 2020
From: Oregon Department of Human Services
To: People living in their own homes or family homes, Children in foster care homes, and Family members of people with intellectual or developmental disabilities (I/DD) living in these settings; and Child Foster Home providers serving children with I/DD

COVID-19 is the illness caused by the novel coronavirus. COVID-19 is a virus that makes people feel unwell. People with other health issues are most at-risk if they get this virus. COVID-19 is spread from person-to-person through droplets in the air and on surfaces that people touch. To protect the health and safety of people and their families, the Office of Developmental Disabilities Services (ODDS) is providing the following guidance.

Help stop COVID-19 by knowing the signs and symptoms

  • Fever
  • Cough
  • Shortness of breath

How to protect yourself and others.

Practice good hygiene

  • Wash your hands often with soap and water for at least 20 seconds especially after
    you have been in a public place, or after blowing your nose, coughing, or sneezing.
  • If soap and water are not available, use a hand sanitizer that contains at least 60%
    alcohol. Cover all surfaces of your hands and rub them together until they feel dry.
  • Avoid touching your eyes, nose, and mouth.Cover coughs and sneezes
  • Cover your mouth and nose with a tissue when you cough or sneeze or use the
    inside of your elbow. Throw used tissues in the trash.
  • Immediately follow the “practice good hygiene” steps above.
  • Clean AND disinfect frequently touched surfaces daily. This includes tables,
    doorknobs, light switches, counter tops, handles, toilets, faucets, and sinks.
  • Clean dirty surfaces: Use detergent or soap and water prior to disinfection.
  • Wash items including washable plush toys as appropriate. If possible, wash items
    using the warmest appropriate water setting for the items and dry items completely.
  • Avoid close contact with people who are sick or have symptoms of COVID-19.
  •  Put at least 6 feet of space between yourself and other people if COVID-19 is
    spreading in your community. This is especially important for people who are at
    higher risk.
  • Choose a room in your home that can be used to separate sick household members
    from those who are healthy. Identify a separate bathroom for the sick person to use,
    if possible. Plan to clean these rooms, as needed, when someone is sick.
  • Avoid gatherings and activities in the community when possible.

Take precautions for visitors

  • Prior to accepting a visitor into the home, screen the visitor for signs and
    symptoms of COVID-19 by asking the visitor the following questions:

    • Have you had signs or symptoms of a respiratory infection, such as fever,
      cough, shortness of breath, or sore throat?
    • Have you had contact in the last 14 days with someone with a confirmed
      diagnosis of COVID-19, or under investigation for COVID-19?
    • Have you traveled internationally within the last 14 days?
  • • If you have concerns about a visitor being ill, you can decide to restrict the visitor
    from entering the home. Consider alternative methods to visit, such as phone or
    video chat.
    • If you choose to allow visitors, provide guidance on protecting themselves and
    others by practicing proper hand washing, limiting surfaces touched, and
    maintaining a safe distance from other household members.

Working with your staff (i.e., Personal Support Worker, Direct Support Professional, or
alternate caregivers)

  • Discuss together how staff can support the you in implementing the steps listed
    above to remain healthy and safe.
  •  Individuals, families, and child foster home providers should expect staff to follow
    good hygiene guidelines and preventive measures to reduce the spread of illness

Back-up Planning & Working with the Case Manager

COVID-19 Resources:

Centers for Disease Control and Prevention (CDC) Guidance
ODDS COVID-19 Information
ODDS COVID-19 YouTube Video

Important Notice About Independence Northwest Operations During Coronavirus Pandemic

UPDATED 06.07.2020

Following several days of consideration and deliberations on the COVID-19 coronavirus pandemic, we decided on March 12th, 2020 to close our physical office in NE Portland. While counties throughout the state begin re-opening, we are continuing with a commitment to a remote approach for the safety of our customers, families, providers, and our team members. At this point, remote work will continue until at least August 1st, 2020.

Rest assured, Independence Northwest will continue operating as a fully responsive and engaged brokerage case management entity – we’ll just be approaching things a little differently.

The coronavirus situation is very serious and we have a public responsibility to do whatever we can to prevent and reduce the spread of the virus. The practice of social distancing has the potential to reduce virus spread and increase our ability to remain responsive in the days and weeks to come.

The majority of the INW team will serve customers, families, and providers through use of remote technology like laptops and cell phones. A small skeleton crew will maintain intermittent work at our office, managing physical information like mail and faxes.

INW Personal Agents and administrative staff will be available by both phone and email during regular business hours and essential in-person meetings will still take place at our office as needed. We will continue to reach out very regularly to customers and their circles of support to check in on services, develop plans, assess support needs, discuss emergency planning, provide coronavirus information and resources, and review and update backup planning.

Should you have any questions, please don’t hesitate to reach out to the Personal Agent(s) you work with or any of us here at Independence Northwest. You can find contact information and phone extensions for our entire team here.

Please note: When a member of our team is ill or unable to respond due to planned time off, we’ll make sure there’s someone available to assist you during regular business hours. Outgoing voicemail messages will state who is providing coverage and how to contact them. If you send an email to a team member who is unavailable, you can expect to receive an out of office email reply letting you know who to contact in their absence.

In the meantime, please protect yourself and those around you by washing your hands, disinfecting commonly used areas in your home and workplace, and staying home. Let’s take care of one another during this difficult time. When we take care of our own health, we’re taking care of the well being of those around us.

Essential Resources:

Stay connected by following us on Facebook or visiting us at www.independencenw.org/

If you know someone who should be added to our mailing list, please have them sign up here we’ll be sure to share information with them as well.

Oregon Disability History: Fairview’s Final Residents Left Twenty Years Ago Today

Twenty years ago today: “A small group of people gathered in front of the welcome sign at Fairview Training Center on February 17th, 2000, to send off the last residents of the institution to new homes in the community.”

We commemorate this pivotal moment in Oregon’s history by sharing multiple articles from The Oregon Clarion, an essential news source for people with disabilities,their families, and community advocates in the nineties and aughts. Follow the link below to read about the history of Fairview’s closure and to check out an extraordinary photo gallery on its history. Established by the Oregon legislature in 1908 as “an institution for the feeble-minded, idiotic, and epileptic,” Fairview housed thousands of children and adults with disabilities for nearly one hundred years.

“As they waved at the departing blue van, smiles beamed all around. These well-wishers, including Fairview staff, self-advocates, Office of Developmental Disabilities Services staff, and community and family advocates were celebrating the culmination of a plan they all had a hand in – the closing of Oregon’s largest institution.”

https://independencenw.org/clarionfairview/

Oregon Disability History: 20 Years Ago Today, the Staley Lawsuit Was Filed

Imagine a time when there were no supports for Oregonians with developmental disabilities living on their own or with their families. A time where there were extensive wait lists for group or foster care homes. A time when a family had to be in crisis in order to receive supports. A time when some people waited over a decade to receive any services at all.

Rewind two decades and you’re there.

Twenty years ago today, history was made and the face of disability services in Oregon was fundamentally changed.

The families of five Oregonians with developmental disabilities filed suit against the state of Oregon on January 14th, 2000. The lawsuit alleged that Oregon failed to offer services to adults with disabilities in the most integrated possible setting and failed to offer services with reasonable promptness. Staley v. Kitzhaber became a class action, representing thousands of people statewide. The suit opened new doors to Oregonians with disabilities, ultimately paving the way for the development of progressive support services brokerages. The suit was filed just one month before the closure of Oregon’s state institution Fairview Training Center, and a settlement was reached in September of 2000. Implementation of the settlement agreement began on July 1st, 2001.

Beyond creating in-home brokerage supports, the agreement pressed for a significant reduction of the number of people waiting for non-crisis out-of-home options through an expansion of comprehensive services for up to 300 eligible individuals statewide.

Hats off to the self-advocates, families, community members, and policymakers who had the determination, strength, and tenacity to press for historic change in the lives of Oregonians with disabilities. What an extraordinary group of visionaries!

Throughout 2020, we will celebrate and illuminate key milestones in Oregon’s disability history. In celebration of the 20 year anniversary of the Staley filing, check out this article by Bill Lynch, then-director of the Oregon Developmental Disabilities Council (now known as OCDD). Lynch’s piece, Waitlist Families Sue State was printed in the April 2000 edition of The Clarion.

Waitlist Families Sue State

By Bill Lynch of The Oregon Developmental Disabilities Council

In a bold move designed to get sorely needed publicly­ funded services, families of  five Oregonians on wait lists for developmental disability services filed suit against the state. Legal assistance to the families is being provided by the Oregon Advocacy Center (OAC), Aid Services of Oregon, and the law firm Garvey, Schubert & Barer. The suit is based on federal Medicaid law which requires that Medicaid eligible individuals with developmental disabilities receive services within a reasonable period of time. The suit further states that the American with Disabilities Act (ADA) requires services to be provided in the most integrated setting.

Four of the families need residential placements for their sons and daughters who require round-the-clock care. These individuals are receiving minimal or no services. Their parents are aging and have various health problems that limit their ability to continue providing 24-hour care.

Jim Staley, one of the plaintiffs, has been waiting for services for 15 years. He has severe mental retardation and health problems. Jim is non-verbal and needs assistance in most tasks of daily living. His mother, Karen Staley, feels a sense of urgency to get him into a residential program. “We are both retired and we want to be here to see Jim transition and support the changes in his life instead of him having to deal with the crisis of our death and changes that would be forced upon him then.”

Diann Drummond needs intensive supports so she can continue to care for her daughter, Molly, also a litigant in the suit. Drummond, who is a single parent, would like to keep Molly at home as ong as possible. Molly is non-verbal and has no self care skills. Currently, Drummond is having to bear the cost for in-home respite care and a full day program in the community. After the suit was filed, state officials agreed to enter into settlement talks. The suit was put on hold for 45 days while the parties meet to negotiate an agreement. If a settlement  cannot be reached, the litigants will continue forward with the lawsuit.

Photo Description: Lawsuit families make statements at a news conference. From left around table, litigant Helen Healy and her mother Susan Schrepping, litigant John Duffield, litigant Molly Drummond and her mother Diann Drummond, Michael Bailey, Brena Flota (her daughter Brandie Evans behind her is a litigant), Karen Staley and litigant Jim Staley.

Personal Support Workers: Updated Incident Reporting Responsibilities

There are some rule changes effective November 1, 2019 that impact Personal Support Workers (PSWs).  PSWs statewide received the following information from the State of Oregon in October 2019.

Effective November 1, 2019, Personal Support Workers must report serious incidents to a supported person’s case manager (Services Coordinator or Personal Agent) immediately, but no later than one business day after an incident happens.

What kinds of things are PSWs required to report?

  • Serious illness that will result in hospitalization, bodily injury, or death without treatment.
  • Serious injury that risks a person’s life or permanent injury without treatment.
  • Physical aggression resulting in injury to the person, PSW, or others.
  • Person receives emergency medical care.
  • Person is missing beyond the time frame established in their ISP.
  • Person is admitted to a psychiatric hospital.
  • Person attempts suicide.
  • Person has an unplanned hospitalization.
  • A medication error that results in harm or puts the person’s health and safety at risk.
  • A safeguarding intervention or the use of safeguarding equipment included in a Positive Behavior Support Plan results in injury.
  • The use of a physical restraint that is not included in a Positive Behavior Support Plan.
  • Death

What must be included in the report?

  • Name of the person
  • Date, time, duration, type, and location of the incident
  • What happened before, or leading up to, the incident
  • Detailed description of the incident, including what you did
  • Description of injury, if injury occurred
  • Name of the PSW and any other witnesses to the incident
  • Actions by the PSW or others to keep the incident from happening again

Where can I get more information?
ODDS has created a training for PSWs and other providers to learn about their responsibilities to report incidents. See more information in this transmittal: APD-IM-19-068: Provider and Partners CAM training in iLearn.

 

 

VIDEO: Am I Eligible for Brokerage Services?

Check out this excerpt from our upcoming online version of our popular Brokerage 101 presentation: “Am I Eligible for Brokerage Services in Oregon?”

This short video explains how a person becomes eligible for brokerage services, with a brief explanation of the difference between an intellectual and developmental disability diagnosis. You’ll learn more about Portland metro area brokerages and how to get connected.

Please visit www.mybrokeragemychoice.org for more information.

 

 

VIDEO: What is a Brokerage Personal Agent?

Check out this excerpt from our upcoming online version of our popular Brokerage 101 informational presentation. This module is: “What Is a Personal Agent?”

A Personal Agent’s job is to connect people with intellectual and developmental disabilities with resources in the community, both paid and unpaid.

There are four primary roles of the personal agent. A PA is a navigator, so your primary link to accessing and understanding resources and services. An additional role that we play is as an advocate. So we’re support that you can rely on when you need help with others. Brokerages across the state require all of our Personal Agents to show up to every IEP meeting that they’re invited to. We have long-standing local area agreements with Vocational Rehabilitation offices to ensure a smoother set of services for you and your family.

Another essential role Personal Agents play is that of Connector. If you’re looking for a particular resource, you should give us a call and we’ll see if we know about it. One key facet of our design is that we support people with getting connected with providers. That might mean sharing resumes and information on Personal Support Workers or taking tours of provider agencies in your area. It could mean helping you interview potential supports or sharing brochures, links, and information on organizations that we believe would be potential fit. We’re told by customers that this is really is a key piece of the services that we offer.

And then, finally, there is the formal Medicaid-funded role of Case Manager. That’s where the paperwork comes in. We’re here to make sure that any of the services that are being paid for through your plan follow state and federal guidelines.

Stay tuned for additional videos on brokerage services!

Upcoming Changes to Oregon CCOs (Coordinated Care Organizations)

Upcoming CCO (Coordinated Care Organization) changes in our area have been announced. This includes the addition of Trillium to tri-county options and the exit of Willamette Valley Community Health, currently serving Clackamas.

Please see the notice from the Oregon Health Authority below for details and informational links:

OHA held a webinar with stakeholders across the state on August 22 to share the latest information about CCO 2.0 and the organizations that will serve Oregon Health Plan members in 2020. The recording of the webinar is now available online.

Learn more about OHA’s communications plan for members with changes to their CCO choices, the next steps in the awards process, and what stakeholders and providers can do to support members during this transition.

The following materials are available for you to download and are posted on OHA’s CCO 2.0 website:

 

 

Inspired Abilities Hosts Neighborhood Emergency Team Training at INW

A special message from our friends at Inspired Abilities:

Do you know about your Neighborhood Emergency Team (NET)? As soon as a neighborhood emergency occurs, a subset of Portland’s citizens don their hardhats and backpacks and head out to help! See https://portlandprepares.org/ for more information. It is great to know who they are and what they are doing and know volunteers are welcome.

Interested? If yes, you are invited to a:

Community conversation with Jeremy Van Keuren of the Portland Bureau of Emergency Management (PBEM)
6 pm – 8 pm on Thursday, September 5th
Independence Northwest 919 NE 19th Ave #275 · Portland, OR
RSVP: https://www.meetup.com/Inspired-Abilities/events/263262786/
Jeremy will help us understand the Neighborhood Emergency Teams (NET) program, citizen expectations and the workings of PBEM.

Facebook event: https://www.facebook.com/events/426002228259613/

Wait, there’s more!

After the NET volunteers complete their training curriculums, they are tested at the Portland Police Bureau Training Division’s Scenario Village. They need a real-life feeling situation, so citizen volunteers help out by being post-disaster/emergency actors. It will be an enriching afternoon where you will learn a lot simply by helping out. You and your friends and family are invited:

Volunteer Patient Actor during NET Final Field Exercises @ Scenario Village
12 noon – 4 pm on Sunday, September 15th
Portland Police Bureau: Training Division, 14912 NE Airport Way · Portland, OR
More details and RSVP:  https://www.meetup.com/Inspired-Abilities/events/263887516/

WARNING:
We will request that some “victims” wear moulage makeup (but this will not be required – you can indicate if this is OK or not when you sign up below). You are welcome to bring friends and family, including children! To have a look at what moulage is, please visit the following link (beware, however; though they are simulated injuries, it’s still a little gory): http://portlandnet.tumblr.com/tagged/Moulage

 

Independence Northwest Celebrates 12 Years Serving Oregon

This week marks twelve years since Independence Northwest officially opened its doors as a support services brokerage. Within the first eighteen months of operation, we grew from one employee to fifteen, enrolling 450 Oregonians with developmental disabilities into brokerage services across three counties.

Over twelve years we’ve connected with over 900 customers, 1,200 Personal Support Workers, and 177 Provider Organizations!

Huge thanks to our customers, families, advocates, board members, personal support workers, direct support professionals, provider organizations, community partners, legislators, and all of the truly extraordinary staff members we’ve had the honor to partner with the past twelve years.

There’s no place like Oregon and we’re honored and proud to be part of the fabric of this incredible community.

Olmstead: Celebrating 20 Years of Landmark Disability Civil Rights Decision

President Barack Obama looks at a painting by Lois Curtis during a meeting in the Oval Office, June 20, 2011. (Official White House Photo by Pete Souza)

President Barack Obama looks at a painting by Lois Curtis during a meeting in the Oval Office, June 20, 2011. (Official White House Photo by Pete Souza)

Today marks twenty years since Olmstead – arguably the most important civil rights decision for Americans with disabilities.

Olmstead v. L.C. was filed in 1995. The plaintiffs were two women – L.C. (Lois Curtis) and E.W. (Elaine Wilson), both of whom had been diagnosed with intellectual disabilities and had received institutional care in the state of Georgia. They sued the state, arguing for the right to community-based, not institutional, care.

The case was referred to the United States Supreme Court. On June 22nd, 1999, Justice Ruth Bader Ginsburg read the Court’s finding that “unjustified institutionalization of persons with mental disabilities we hold qualified as discrimination.” Further, the Court argued that people with disabilities have the right to receive state-funded community supports and not be unjustifiably segregated.

Following the Olmstead decision, a group of five individuals with disabilities and their families sued the state of Oregon for their right to home and community-based services. The class action lawsuit – Staley v. Kitzhaber – was settled swiftly and paved the way for the creation of brokerages and community-based supports for thousands of Oregonians. Brokerages opened statewide in 2001 and today we serve nearly eight thousand adults with disabilities in every county. In 2013, local community developmental disabilities programs began offering support services to people living in their own or family home as well.

Twenty years on, we celebrate the extraordinary vision of Oregonians who fought for – and won – their right to community-based supports.

Learn more at https://www.olmsteadrights.org/

Hear Justice Ruth Bader Ginsburg read the Olmstead Decision on June 22, 1999

 

Oregon Electronic Visit Verification: True or False Series

As we get closer to Oregon’s planned Electronic Visit Verification roll out for Personal Support Workers statewide, ODDS has begun posting a series of Fact or Fiction Facebook posts to help community members better understand what’s happening and what to expect.

Currently, there is an EVV pilot happening in southern Oregon with one brokerage and one county (Creative Supports Inc. and Jackson County). Full implementation is expected sometime summer 2019. Information and training details are all forthcoming.

If you need a refresher, here’s some details from Oregon Developmental Disabilities Services:

“EVV is part of a federal law that was passed by Congress in 2016. The 21st Century Cures Act requires states to verify the delivery of Medicaid-funded Attendant or Personal Care services in real time (at the time the service is occurring) from providers. The EVV system must electronically capture the following information at the time the service is occurring:

  • Type of service performed
  • Individual receiving the service
  • Date of the service
  • Location of the service
  • Individual providing the service
  • Time the service begins and ends

EVV will be required of all PSWs in Oregon by 2019. The 21st Century Cures Act also recommends that states seek stakeholder input from family caregivers, PSWs, and individuals receiving services along with other stakeholders when developing their EVV systems. See PDF presentation for more information.”

Be sure to follow the eXPRS Facebook page and bookmark the ODDS Electronic Visit Verification Project web page to stay on top of the latest developments.

Check out the slideshow below with a few of the True or False posts from the eXPRS Facebook page.

eXPRS EVV True or False

eXPRS EVV True or False

eXPRS EVV True or False

eXPRS EVV True or False

eXPRS EVV True or False

eXPRS EVV True or False

ODDS Announces Change to Provider Agency Billing Process

The following message was emailed to Provider Organization contacts by the six Portland metro area brokerages on 02/02/2019.

 

IMPORTANT NOTICE TO OREGON PROVIDER ORGANIZATIONS
RE: APD-PT-19-003* Policy Transmittal: Agency Billing Activities Effective 2/1/2019

As of Friday, 2/1/19, most eXPRS submissions by provider organizations will automatically be paid by ODDS without case management review. (Service codes OR539, OR570, and OR310 are excluded from this change.) The Oregon Office of Developmental Disabilities Services (ODDS) will conduct post-payment reviews of provider organization documentation. This change may expedite payment to some provider organizations, but it does not change documentation requirements.

Oregon Administrative Rule 411-415-0090 requires Case Management Entities (both CDDPs/counties and Brokerages) to conduct extensive and specific monitoring of services including but not limited to:

  • Ensuring all services provided align with those authorized in the ISP
  • Confirming support and progress toward goals
  • Confirming individual choice is being honored

The review of provider organization progress notes is an invaluable tool in meeting these monitoring mandates. For this reason, the six Portland metro-area brokerages will continue to expect to receive progress notes for all services delivered. Per the state’s transmittal, these notes must include:

  • Customer name
  • Provider of service
  • Dates of service (the date range is sufficient)
  • Units of service provided (total number of units for the period is sufficient)
  • A progress note summarizing the service provided and progress toward goals (weekly or monthly summaries are perfectly acceptable)

As guidance, please review the following from the Indirect Case Management Monitoring Worker’s Guide:

Adequate provider agency progress notes focus on describing the supports a person received to achieve the desired outcome. These include the ADL, IADL, medical and behavioral supports identified on the ISP as being needed. The notes should focus on the specific activities (i.e. “visited a museum”) only insofar as they are important to achieving the desired outcomes as described in the ISP. Simply stating the name of the service associated with the procedure code is not sufficient (i.e. “Provided Day Support Activities” is not an adequate progress note to support a claim by the agency or for the purposes of indirect monitoring.) An adequate note will allow a SC/PA to determine if the services are consistent with those authorized in the ISP. Provider agency progress notes are also a place for the provider to convey observations about possible changes in support needs, challenging behaviors and a wide variety of topics. These reported observations should be reviewed by the SC/PA for their potential impact on risk identification, new person-centered information, and service planning. The SC/PA’s supporting progress note should reflect their assessment of the observations and the actions they will take in response, if any.

This excerpt demonstrates that progress notes are an important tool in monitoring supports and communicating changes in an individual’s needs and choices. As such, we request that providers submit progress notes for all supports no later than one month after the provision of services. For example, notes for services provided in February will be due by the end of March.

In compliance with the transmittal, we will be notifying ODDS when we do not receive progress notes within the 30-day window.

We anticipate that issues with overlapping billings will likely continue. As CDDPs/counties Brokerages are no longer part of the invoicing and payment processes, providers will need to seek resolution of these issues from ODDS.

Finally, we trust that our provider organization partners share our values with regard to continuing to offer customers the authority to review and authorize their services via signature. We will have one-on-one conversations with each of our customers regarding their options, and plan to solicit broad customer and family input on how to ensure choice continues to be offered and honored.

Thank you for your continued partnership and your service to our shared customer base as we work together through this next transition.

 

*Source: http://www.dhs.state.or.us/policy/spd/transmit/pt/2019/pt19003.pdf

 

 

Ready for College? Learn More About PSU’s Inclusive College and Employment Program

A Special Announcement from Ann Fullerton, Professor Emeritus of Special Education, Portland State University

Do you know an adult with developmental disabilities that wants to go to college? The Career & Community Studies Certificate at Portland State University provides a four year inclusive college and employment program for individuals with intellectual disabilities in Oregon.

  • Person-centered planning and self-directed goal setting
  • A unique weekly schedule including academic courses, employment and campus involvement
  • Students learn to manage their own schedule and use supports they need
  • Part-time employment on or off campus each term
  • Enrollment in 1-2 college courses each term with other PSU students
  • Choose and participate in PSU’s recreational, social and student organizations
  • Academic coaches, peer navigators and CCS advisors support students to succeed in college


But how could they afford it? 
We have adult students in CCS that are financially independent, receiving SSI and working part time while they attend college. They are eligible for financial aid to go to college. Also, because our students are working in competitive wage integrated employment, they are eligible for an Individual Development Account (IDA). For dollar they earn and place in their IDA account they receive a $3 match up to a total of $12,000 for their education. Lastly, Charles Taylor of Mountain Crest Counseling Services has created our first scholarship for CCS students. 

How can we learn more? Attend INFO NIGHT Jan 17th. 6 pm Smith Memorial Union 1825 SW Broadway Portland, OR 97201 ROOM 330

Email us at tcio@pdx.edu. We would love to talk to you. We can respond via email, phone call, or schedule an appointment to visit us. Review information on our website: https://www.pdx.edu/career-and-community-studies/

What is the deadline to apply? Application Deadline March 2, 2019 (We provide support to apply!)

How My Son Cody Sullivan Made History

By Ann Sullivan

When my son Cody Sullivan (AKA Coach Cody), was born with Down syndrome, I knew he would make a great difference in the world. This has rung true for the past twenty-two years, culminating on April 28th, 2018 when he became the first person with Down syndrome to graduate from higher education. 

Cody was included in general education from kindergarten through grade 12. He wasn’t shoved into a secluded classroom where they took trips to the park to pick up litter or wipe down tables in the cafeteria. Cody learned alongside his peers – and just by being included – he taught people that having a disability isn’t scary.

When he was a high school senior, Cody’s friends were delightfully sharing where they were going to college. This inspired him to seek the same. Concordia University Portland agreed to have Cody attend classes and work toward earning a certificate of achievement in elementary education. We have been part of the West Coast Think College Coalition, which is focused on creating opportunities for individuals with intellectual disabilities to attend higher education.

On April 28th, graduation day at Concordia University, Cody was the first person with Down syndrome in Oregon to cross the stage and receive his certificate. As he crossed, his many friends erupted in love and joy with a standing ovation.

Today, Cody works as a Teacher’s Aide at a local charter school.

Learn more about the West Coast Think College Coalition here and listen to Cody’s interview on KXL FM News 101 here

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