Capital Home Care on the Impact of Personal Care for People with Disabilities

Karin Hitselberger, Public Education Associate

Home and personal care can be an essential aspect of life for many people with disabilities and their families. Home care services play a vital role in helping some individuals with disabilities live their lives independently in their own community, helping to ensure that they are able to live a life without limits. Capital Home Care, a program of UCP of Central Pennsylvania, is a non-medical home care provider for individuals over the age of 18 in the Central Pennsylvania area.

Home care is a term that encompasses a variety of different services that can be received in a consumer’s home. Angela Griffith, Director of Capital Home Care, explains that the services provided through Capital Home Care can be anything from assistance with chores, to help getting to (or participating in) activities in the community, personal care assistance, and a range of other tasks. Each consumer receives customized care; no two people are exactly alike, so each person’s care may look a little different.

Angela says one of the most important things to understand about home care is that personal care services are essential for enabling people to live at home with their families or independently, which many would be unable to do without home care services.

Angela started with Capital Home Care as a Personal Care Attendant, or PCA, and says one thing people may not realize is the impact these services have not only on the consumer but also the provider, adding that providers get as much out of the experience as they give to consumers.

Angela says that she’s been able to experience this impact first-hand, having had the opportunity to accompany one of Capital Home Care’s consumers and his PCA to the Pennsylvania State Capitol to advocate for disability policy.

“People don’t often realize the impact it has for the caregiver and the consumer…that was great to see, and a reminder for me of what we do every day,” she says.

To find out more about home care, or other services your local UCP affiliate may provide, contact them using the affiliate locator on our website.

From right, Angela Griffith, along with a consumer and his PCA at a Pennsylvania Lobby Day

From right, Angela Griffith, along with a consumer and his PCA at a Pennsylvania Lobby Day

United Cerebral Palsy Statement on Hurricane Harvey

We share the feelings of so many health and human service organizations across the U.S. who are watching the storm and recovery efforts underway in Southeast Texas.

We are thinking of all the families and communities who have been impacted by the storm. We know, from experience, that a storm of this magnitude can produce unimaginable destruction– and may compromise the safety of people living with disabilities.

United Cerebral Palsy affiliates in Oklahoma and Louisiana are actively engaged in the recovery efforts underway and may assist as called upon. We are also monitoring the storm and the possible impact it may have for our affiliates in Louisiana and other neighboring areas. UCP affiliates work diligently on disaster preparedness plans to ensure that the individuals and families in their care, across the U.S. and Canada, are always kept safe in any type of emergency and UCP National supports their efforts.

For information regarding the status of Harvey, please visit HHS’ Public Health Emergency website: https://www.phe.gov/emergency/events/harvey2017/Pages/default.aspx

Residents in the Houston area may also find resources at the Mayor’s Office for People with Disabilities: http://www.houstontx.gov/disabilities/

To ensure that you. your family and your loved ones are prepared in the event of a natural disaster, we recommend our blog post at My Life Without Limits: http://mylifewithoutlimits.org/disaster-preparedness-month-tips-and-tricks-to-help-you-live-a-life-without-limits/

FEMA‘s resources for people with disabilities, access, and functional needs: www.fema.gov/resources-people-disabilities-access-functional-needs

Additional preparedness tips and resources can be found on UCP’s website at: http://ucp.org/resources/health-and-wellness/safety/disaster-preparedness/

 

Facts About Employment

This post and the accompanying infographic are by UCP’s Summer 2017 and Programs and Development Intern, Sara Shemali

 

The worst global recession in recent history, the great recession, yielded unemployment rates which peaked in 2009 at 10 percent. Lowering this exceptionally high rate of unemployment became a national priority in America. Yet, the current rate of unemployment for people with disabilities still stands at 10.5 percent, over double the rate of current unemployment for people without disabilities and still greater than that peak rate of 10%. The difficulty that people with disabilities experience when finding and applying for jobs has rippling effects, making it harder for them to achieve financial autonomy and gain independence, as well as a myriad of other benefits of employment.

Barriers and Benefits

Individuals with disabilities face significant barriers to employment that persist regardless of education, race, age,or gender. According to data collected by the Bureau of Labor Statistics in 2016, at all levels of education, people with disabilities are less likely to be employed than their able-bodied counterparts. This data reflects the obstacles many people with disabilities face when looking for and obtaining work. The Bureau of Labor Statistics, in a 2013 news release, reported that 70.8 percent of people with disabilities between the ages of 16 and 64 had experienced at least one barrier to employment in the past. These barriers include a person’s own disability, lack of education or training, insufficient transportation, and the need for accommodations on the job.

When individuals with disabilities are given the resources to overcome these barriers, they are valuable assets to the companies that hire them. Supportive employment for people with disabilities, such as the partnership between UCP of the North Bay and WineBev, has long proved to be effective. WineBev implemented a successful training program which provides not only accessible but also competitive employment for people with disabilities. Another company found that the young people with disabilities that they hired had an attrition rate of only one percent, compared to 10 to 15 percent for people without disabilities. Their workers with disabilities were also more productive than their workers without. Furthermore, a recent study published in the Journal of Autism and Developmental Disorders demonstrates a link between having a developmental disability and being able to come up with unique and creative solutions to problems.This trait makes people with developmental disabilities excellent candidates for jobs which require divergent and out of the box thinking.

The Business Case

Employment of people with disabilities is not just a worker issue. It is also imperative to analyze the benefits of hiring individuals with disabilities from a business point of view. One concern employers may have about hiring a candidate with a disclosed disability is the cost of accommodations. However, the Job Accommodation Network has found that most (59%) of accommodations cost nothing to employers to implement. One accommodation that employers are increasingly making is allowing employees with disabilities to work from home some or all of the time, an accommodation that more and more workplaces offer to employees with or without disabilities anyway. It is currently estimated that 463,000 people with disabilities, making up 7.1 percent of people with disabilities, regularly work from home.

When accommodations do incur some cost, 36 percent of employers reported a one-time cost, typically around five hundred dollars. Only five percent of employers reported that the cost of accommodations was ongoing or a mixture of one-time and ongoing costs. In addition to being low-cost, accommodations can have a number of positive consequences, including retaining valuable employees and increasing the employee’s productivity, reducing employee absenteeism, improving employee interactions, and increasing productivity for the company as a whole. Employers also have a variety of free resources at their disposal to help them meet the needs of their employees with disabilities, including the Employer Assistance and Resource Network (EARN) and consulting from the Job Accommodation Network (JAN).

Technology and the Future

Although the levels of unemployment for individuals with disabilities may seem staggering when compared to the unemployment rate of people without disabilities, there is promise for improvement in the future. As technology advances, new devices that further accessibility and that improve health and longevity will likely increase employment of people with disabilities. The BrailleNote Apex, one such new technology, features a word processor, calendar, media player, web browser, and GPS, among other things, all in braille and in one device which assists the visually impaired. Assistive technologies are not only becoming more sophisticated but also more commonplace and integrated into the workplace. For example, Microsoft has just announced its plans to integrate eye-tracking features into Windows 10, which will make the software more accessible, and make it easier for programmers to improve and innovate new eye-tracking applications and accessories. These advancements will make it easier for people with disabilities to access job opportunities and work without limits.

For more information regarding employment for people with disabilities check out UCP’s Facts about Employment infographic

For a detailed image description of the infographic, click here.

 

 

UCP National Talks Assistive Tech with Provail

This post was written by UCP Summer 2017 Programs and Development Intern, James O’Connor

 

“We try to ask ourselves: what would make this person’s life better, faster, easier?”

This is what motivates Brenda Chappell, Director of Clinical Services at Provail, a UCP affiliate located in Seattle, Washington. Brenda recently spoke to us about Provail’s assistive technology programs.

[Image Description: A white woman with short brown hair wearing a green sweater and a black scarf holds a smartphone to a book while reading in what appears to be a children’s classroom. She is looking off to the side.] Photo: Lawrence Roffee

 

Assistive technology is an umbrella term that covers equipment, software, system, or any item that is used by people to find and or maintain a job and/or perform activities of daily living. Technology can be big, like an automated lift for van or bath, or small, like a Velcro-attached grip for a fork or a pen. It can be new-age interactive voice activated software for speech therapy or a wheelchair component. It can be high-tech–a computer screen operated by eye movement or low-tech, like a specially-designed door handle for people with muscle strength or dexterity problems.

Assistive technology can often be complex and very user-specific, and this is where Provail’s team plays an important role. At their AT (assistive technology) clinic, they take a holistic approach to finding the best technology for each person.

Brenda and her colleagues’ AT  programs bring professionals from Provail into schools and homes to recommend AT, and teach users, parents, teachers, therapists, and caregivers the best ways to put a person’s AT to best use. Provail works with kids as young as 4 years old, as well as adult clients, and individuals all the way through the lifespan.

Brenda notes that students with earlier access to AT have overwhelmingly better outcomes in both learning and lifestyle. She makes it clear that enabling mobility and communication at an early age are core to the program at Provail. “Before this unique program, we would see adults coming into the clinic with no AT and no mobility. Now, parents doing a 10-week program with us are finding successes that they never knew were possible.”

On top of helping people find and use the best possible AT for their needs, Provail also helps connect users with typical and alternative funding sources, making the stressful process of financing AT easier for many of their clients.

As assistive technology becomes more complex, more varied, and more common, it is important to put people first and keep in mind Brenda’s important question: what would make this person’s life better, faster, easier?
Check out your local affiliate to find out more about what type of AT services may be available, including financial resources that may be available.

#KnowMedicaid

 

As Google search results indicate, many more Americans have grown concerned about losing their (or a family member’s) Medicaid benefit. We at UCP are receiving an increasing number of inquiries about Medicaid and the services and supports it provides for many individuals with disabilities and their families.

 

Even without a pending health care bill in Congress, it can be overwhelming to navigate the process of accessing the funding and benefits necessary to receive the support needed so you or your loved one can live a life without limits. While there is no one way to simplify the process, there are ways to make it a bit easier. The tips and tricks below will help you in your conversations with Medicaid and other agencies.

 

When you’re done checking out our tips, you will also find a PDF guide with the contact information for Medicaid (and related agencies in all 50 states) at the bottom of this post.

 

Keep Records of All Conversations, and Be Sure to Seek Clarification When Necessary:

 

Whenever calling your state or any other entity) regarding services and supports, be sure to keep notes about your conversation including: who you speak with , what department they are in, what department they refer you to, and any other pertinent details.

 

This is really important in the case that there is any confusion or conflicting information during the process , because you will be able to provide past information about what you were told and when.

 

It is also a great idea to ask the person you are speaking to to follow up with an email, if possible; that way you are able to see their summary of the conversation, and open up a dialogue that may help in the future should there be any misunderstandings.

 

Remember That State and Federal Agencies Are Not Identical:

 

When working with Medicaid, or any other government program or agency, it is important to be aware of the difference between the agency in your state, and the federal agencies in Washington, DC.

 

While agencies can be connected, the state agency handles state programs and issues and the federal agency counterpart handles national ones. When getting information about services and supports, it is vital to differentiate between what is available and provided by your state, and what might also be available on the national level.

 

This is also key because these differences affect how programs are funded, and may alter the process required to become eligible. Sometimes programs may be jointly run on the state and national level, but it is still important to be aware of when you’re talking to, or about, your individual state versus when you’re looking at things on a national level.

 

Not All States Run Programs the Same Way, (or a Call Agencies by the Same Name):

 

Another reason it is important to be aware of the difference between state and federal programming is because the way programs, such as Medicaid, are administered can vary significantly from state to state.

 

Therefore, be sure to investigate how things are run in your specific state, and not go off of the experiences of an individual who may live someplace else. A program that is provided through the Department of Health and Human Services in one state may be provided through the Department of Welfare in another.

 

Before getting discouraged and thinking something doesn’t exist, always remember to try a different name or department, because you never know what it might fall under in your state.

 

Always Ask for Other Options:

 

Just because one program, grant, or service is not an option for you, doesn’t mean there isn’t something out there that can help with your situation. Even if you find out that the program you are looking into will not work (or be available) based on for your situation,, be sure to ask the person you’re speaking with if they know of any other programs that may be able to help.

 

When considering your options, it is also important to remember that different programs have different eligibility requirements. So, be sure to provide as much information as possible to determine if you are eligible for a specific program.

 

Obtaining services through Medicaid (or other agencies) is rarely a simple process, but we hope that these tips– as well as our guide of various state offices involved in the administration of services and supports for individuals with disabilities– will make your journey a bit easier.
Do you have any other tips or tricks you would like to add to the list? Let us know on Facebook or Twitter using the hashtag #KnowMedicaid. To learn more about Medicaid in your state, check out our resource guide.

What You Need to Know About College as a Student with a Disability

The transition from high school to college can be both a scary and exciting time for every student. College is a whole new world, and unlike anything most students have yet experienced.

 

Before heading off to college, students have questions and concerns about their future. Most students probably wonder about their major, whether they will like the school they have chosen, and what their new friends will be like, but for students with disabilities, the questions can often be a little more complicated.

 

Students with disabilities may wonder about accommodations, accessibility, services and supports, and getting help with everyday needs. And these questions may not be easy to answer.

 

As someone who’s a former college student, and an individual with a disability, I wanted to share some of the things that I wish I had known freshman year in hopes that it may make your transition a little bit easier.

 

Self Advocacy Is Key:

Growing up, it was typically the responsibility of your parents, teachers, or other administrators to make sure you got the accommodations and supports you needed to be successful in school. But, in college, it becomes primarily your responsibility.

 

Self-advocacy is always important but becomes especially essential when navigating college. College is often the first time students have lived away from home, and it is important to remember that you are your own best advocate: there are lots of supports in place to help you be successful, but you have to be proactive and reach out so that the people around you know what you may, or may not need.

 

Most schools have Offices or Departments of Disability Services in place to help students with disabilities get the accommodations they need, such as note-taking support, extra time on exams, or any other reasonable academic accommodation, but nobody from the office is going to seek you out, especially if they don’t even know you’re there.

 

Make a point to become familiar with the services and supports that exist on your campus. Talk to the disability support staff to work on a plan for your accommodations to help ensure success from day one. You are in college now and, like your peers without disabilities, there are still people there to help you, but for the most part, you are in the driver’s seat now!

 

The Laws Are Different:

K-12 education for students with disabilities is mandated under the Individuals with Disabilities Education Act (IDEA), this means that students with disabilities are entitled to public education and that it is the responsibility of the school to see that all students are getting an appropriate education. Colleges don’t fall under IDEA, and therefore, are not required to make accommodations to the same degree as the public school system.

 

In college, students with disabilities are protected from discrimination, such as inaccessibility of buildings, under the Americans with Disabilities Act (ADA). Schools must provide reasonable accommodations such as notetakers or extra time on exams, but they don’t have any obligation to modify coursework to accommodate students with disabilities or provide additional supports such as assistance with personal care or activities of daily living to ensure a student is successful.

So, if you are, for example, a wheelchair user who needs help to get in and out of bed or perform other daily activities, the ADA requires your school to provide you with an accessible dorm room, but there is no legal obligation to provide you with an assistant or other types of personal care support.

 

This is important to know because it means that you will need to set up the supports you need on your own before you head off to school. Some schools have programs to help students with personal care needs, but this is not a requirement for all schools. Look into what your school offers to figure out what kind of supports may be available.

 

For more information about the difference in laws governing K-12 education and college check out the resources below:

 

https://umaine.edu/disability/accommodations-high-school-vs-college/

 

https://www2.ed.gov/about/offices/list/ocr/transitionguide.html

 

https://www2.ed.gov/about/offices/list/ocr/docs/auxaids.html

 

 

It’s Okay to Reach out for Help and Support:

If you’re feeling overwhelmed, or struggling more than you thought you would, there is absolutely no shame in asking for help. Mental and emotional well-being is just as important as physical health, and academic support.

 

Most colleges have a variety of services to support students from health centers, to counseling and other mental health services, and wellness programs, in addition to academic supports. Take advantage of the support and community that exists around you, and don’t be afraid to reach out.

 

Additionally, there are lots of groups and activities on college campuses, and many colleges even have organizations run by and for students with disabilities. These organizations may or may not be support oriented. Many of them may just be social groups, or groups focused on advocacy and activism.

 

Whether or not they are disability focused, student organizations and extracurricular activities can be another great place to find support in college.

 

 

Transition Is Not One-Size-Fits-All:

Everybody is unique, which means that everyone’s experience in transitioning from high school to what comes after will look, feel, and be, very different. Whether you’re planning to go to school far away, attend college close to home, or do something else after high school, it’s important to remember there is no right way to transition from high school to beyond.

 

Whatever you decide to do after high school graduation, focus on making sure that it’s the right option for you, rather than worrying about whether it’s what other people expect.

 

For more information you need to know,  check out the topics below:

What You Need to Know About Preventative Care and Disability
What You Need to Know About Sexual and Reproductive Health and Disability

Transition Is…

 

Sometimes, unexpected or scary but also real and exciting

 

There are specialty clinics and hospitals throughout the country to address the unique needs of children with disabilities like cerebral palsy, but the same is not true for adults. Once people with disabilities reach the age of 18 or 21 they often have to stop seeing their pediatric providers, only to find there is no adult provider to take their place.

 

This is a major issue that affects young adults and adults with disabilities throughout the country, and contributes to a range of health inequalities and other issues. As we have addressed before, transitioning from pediatric care to adult care can be particularly difficult if your new doctor has little to no familiarity with disability.

 

Adults with disabilities need access to the same care as other adults, but they also need providers who are familiar with the unique needs that may come along with disability, and that is when young adults with disabilities can feel as though they’ve entered a void. However, one UCP affiliate is working to bridge that gap in a particularly creative and comprehensive way.

 

UCP of Minnesota/Gillette Specialty Children’s Hospital is the home of Gillette Lifetime, a clinic for patients with lifelong disabilities such as cerebral palsy and spina bifida who are ages 16 or older.

 

Kathy Lindstrom, an Advanced Practice Registered Nurse, at the Lifetime Clinic, says it grew out of an unmet need in the community.  Lifetime Clinic’s Transition Program started as, “a grassroots movement put together based on patient needs. “

 

Kathy Lindstrom Advanced Practice Registered Nurse, at the Lifetime Clinic

Kathy Lindstrom Advanced Practice Registered Nurse, at the Lifetime Clinic

 

 

Easier, with the right resources and support

 

The services at Gillette Lifetime Transition Clinic merge medical needs with the unique psychological and social needs of transition-aged young adults with disabilities. As Lindstrom explains “everything seems to change when patients reach the late teenage years; it’s not just medical, but in all aspects of their lives.”

 

Lindstrom says, “Legal decision making becomes an issue, [so does vocational] planning, post high school planning and discussions about future living arrangements.  Parents are bogged down with meeting the challenges of daily life, and sometimes it can be hard to develop a vision for the future… and so transition sneaks up on families.”

 

Parental involvement in the process often shifts at this stage, so it’s also important to prepare both parents and young adults for this change.

 

Transition is not a simple process that happens overnight, or automatically, on a patient’s 18th birthday. Lindstrom understands that it can be hard for patients to come to the clinic for the first time, as many of them have had the same providers for their entire lives, and it can be hard to let go.

 

Lifetime makes this transition a little bit easier by allowing patients to transfer some care to adult providers, while continuing to collaborate with other specialty providers for other aspects for a period.

 

During their first visit to the clinic, patients meet with Lindstrom and her colleagues to discuss transition, and outline the issues that are most important to them. These appointments are conversations, not exams, and take place in a conference room, as opposed to an exam room. The appointment gives patients, and their families, an opportunity to discuss any questions or concerns they may have, and to get a feel for the services available at Lifetime.

 

 

About choices, and coordination

 

Lifetime is focused on specialty medical needs, and is not a primary care facility. Lindstrom offers the following advice to any individuals with disabilities looking for primary care providers:

 

  • Meet with the family Primary Care Provider (PCP) and talk about the potential of becoming a patient. If the doctor already sees the rest of the family, they might be a good start for patients with disabilities as well. She encourages patients to integrate into their family’s practice whenever feasible.

 

  • Arrange an advanced meeting with the PCP and see how accessible the facility is before becoming a patient in the practice.

 

  • If at first you don’t succeed, try try again. Lindstrom cautions that you may not click with the first provider you meet with, but that doesn’t mean you won’t find somebody who works for you.

 

  • Your insurance will affect your options for a PCP, so remember to check first to make sure your preferred provider is covered!

 

Lindstrom also encourages primary care providers to connect with a patient’s specialty care providers. Gillette operates a telehealth triage line for all patients and their providers, regardless of age. If a primary care provider is unsure of how to treat a patient, they can reach out and communicate with other members of the patient’s care team.

 

In addition to medical care, Gillette Lifetime supports patients with the social aspects of transition such as recreation, community integration and helps prepare them for changing relationships with their family and friends, even giving them space to talk about the potential of romantic relationships.

 

Transition is difficult for every young adult, but when you have a disability, you may not know where to go, and you may have a unique set of questions that you feel like no one can answer, which is why transition clinics like Gillette Lifetime’s Transition Clinic are so important.

 

Learning more

 

There are several clinics that specialize in current medical recommendations for young adults with cerebral palsy throughout the country.

 

If you are located outside of Minnesota or the Midwest, and would like to see if there is a transition clinic near you, please be sure to check out our latest guide on healthcare for adults with cerebral palsy and related disabilities for clinics and additional resources that may be helpful in the transition from pediatric to adult health care.

 

Patient with a practitioner at the Lifetime Clinic