Long Distance Caregiving
Long Distance Caregiving is possible with some planning, patience, and local supports for individuals who are still able to reside at home without 24-hour care. Below you will find some tips, articles, and services to consider when having to provide long distance caregiving to a loved one and how to make it successful.
- Stay Organized: Keep track of important documents, medical records, medication log and contacts in a binder (Caregiver Log) where all caregivers can review and leave daily notes. This will help with communication, reminders, and to track changes.
- Build a Support Network: Connect with local relatives, neighbors, religious community or community members who can provide updates and assistance. Separating small duties between supports can made a significant difference in having others agree to providing some level of care such as having a neighbor who can help bring the trash can to the curb weekly, pick up the mail daily and bring it to the door, or mow the lawn or provide snow removal services.
- Community Services: Hiring a network of community services can be very helpful in regulating and maintaining long term natural supports of friends and family who may be willing to help but who are not looking to act as full-time providers. Community Services vary per location and benefit status. Some community services are house cleaner, gardener, handyman services, snow removal, and home pick-up for trash or yard waste services. Shopping Delivery services apps can be helpful and paid from afar such as Door Dash and Instant-a-Cart. Local Grocers may also deliver or have a purchase on-line option. Amazon will delivery to all of Se Alaska and many products can be purchased and shipped directly to a residence to help limit items needing to be purchased in the community by someone else. Meals-on-Wheels is available through reginal Senior Centers.
- Use Technology: Video calls, remote monitoring devices, fall detection or life alerts, and online health portals can help you stay informed.
- Plan Visits Wisely: When visiting, prioritize medical appointments, home safety checks, Meeting with caregiver and natural supports in the family or community, and quality time.
- Discuss Legal & Financial Matters: Ensure necessary paperwork, such as power of attorney and insurance details, is in order. Make sure that there are current signed Release of Information for all providers and between providers to help promote and ensure communication. Any POA, Advanced Directive, or Guardianship/Conservatorship documentation should be available in the home to local providers to help support in communications s needed with providers. Do Not Resuscitate (DNR) should be posted on the refrigerator in plain sight with a contact list for family and caregivers.
- Family Medical Leave Act: Educate yourself on your coverage through your employer. Family Medical Leave will provide you with unpaid leave to attend to the medical needs of a family member (or yourself) while providing you with legal protection to not lose your employment or benefits. There is documentation that will need to be completed to enact FMLA that will take coordination with the medical provider. Alaska has an additional coverage known as the Alaska Family Medical Leave Act. See article below for more details.
- Money Matters: If you are managing someone else’s money from afar, you may consider having a personal spending account and debit card available in the home for use by your loved one and/or their supports with a separate bank account for bill paying. This will help reduce any fraud or loss of funds if the personal spending account is used inappropriately and will help maintain control of the financial resources. Additional gift cards can be utilized as well, such as Visa, Mastercard refillable cards and/or store specific cards.
- Care Coordination or Case Manager Services: Work with local agencies to arrange home care, adult day services, meal deliveries, transportation or other supports.
- Communicate Regularly: Maintain open communication with caregivers, doctors, family members, and supportive friends to stay updated. Ask caregiver and/or medical providers to include you by phone for appointments or caregiver meetings so that you can directly communicate any concerns or ask questions. If the majority of care is from neighbors and friends, you may consider a monthly or bi-monthly potluck with your loved one to offer a since of connectedness, a time to discuss any concerns, and a bit of respite for each to have quality time and not just caregiving time. Having a Caregiver Log, up-to-date Relesase of Information, Legal documents will all promote better and consistent communication between supports. Any POA, Advanced Directive, or Guardianship/Conservatorship documentation should be available in the home to local providers to help support in communication with providers, local utilities, or other services.
Article:
National Institute on Aging: What is long distance caregiving?
Home Care Agencies
Referral to Personal Care/Direct Support Professional Agencies
In Se Alaska, each community has an agency that can assist with providing in-home and community Medicaid Wavier Services. These services are mostly provided through the Consumer Directed Care Program in which an agency will assist the consumer to hire a person to provide personal care support through one of many Medicaid programs. Some agencies do have professional skilled staff that are available to provide care by private pay or through other benefits.
Referral Tip:
- Know your benefits and eligibility. Consumer Directed Care is a service paid for under Medicaid Wavier or Personal Care Services. There however are other benefits such as VA Voices, private payment, or grants to assist with the cost associated with an in-home care provider.
- If you have been denied or released from services due to health and safety concerns. The reasons for that denial will need to be corrected to possibly support the change in agencies. Agencies will want the working environment to be safe for you and the employees.
- To hire a friend or family member as a Consumer Directed Care provider, they must be able to pass a criminal background check. The agency will assist with this process and managing administrative needs.
- If you are offered the option to be added to a waiting list, do so. A waiting list helps the employer to hire and/or offer additional hours to current employees while providing additional support to the community.
Process:
Step 1: Determine your benefits. If eligible for Medicaid Wavier Services, your Care Coordinator can assist you with this referral process.
If you do not have a Care Coordinator, see Step 2:
Step 2: Contact your local agency. See Service Provider Directory, under Elder Services Section of this site for additional information. Be prepared to discuss payment for services (and/or eligible benefits such as VA Voices Program, private pay, grant funding etc.) and type of assistance needed.
Tip: Statewide services through the Consumer Directed Care Program are available through Consumer Direct Care Network Alaska (888) 900-7962, program eligible requirements still apply.
Community Specific PCS Agencies
Haines/Klukwan – Cornerstone Home Health, Consumer Direct
Skagway – Consumer Direct
Gustavus – Consumer Direct
Hoonah – Cornerstone Home Health, Consumer Direct
Juneau/Douglas – Cornerstone Home Health, Compass Home Care, Consumer Direct
Angoon – Consumer Direct, Cornerstone Home Health
Tenakee – Consumer Direct
Pelican – Consumer Direct
Sitka – Center for Community, Consumer Direct
Wrangell – Consumer Direct
Petersburg – Cornerstone Home Health, Consumer Direct
Ketchikan/Saxman – Community Connections, Consumer Direct
Metlakatla – Community Connections, Consumer Direct
Prince of Wales – Community Connections, Consumer Direct
Hyder – Consumer Direct
Kake – Center for Community, Consumer Direct
Alternative Decision Making - Representative Payee, Power of Attorney/Advanced Directive, Guardian/Conservator
Representative Payee
The Social Security Administration offers recipients to appoint someone else to assist with financial management of income received by Social Security. Social Security does not recognize an appointed Power of Attorney, Guardian, or Conservator as a decision maker unless the decision maker has been approved as a Representative Payee. In limited situations a professional representative payee may be available. In most cases, Social Security will task the recipient in choosing a family or friend to act on their behalf.
Social Security Administration will require a Representative Payee at times to receive financial benefits. In this situation, often a physician has documented that a decision maker is needed to assist with financial decision making. If the medical condition changes or improves additional medical documentation can be submitted to request to end the representative payee relationship.
If for some reason the appointed Representative Payee is not available or needs to be changed. Contact Social Security Administration immediately. You may be required to have an alternative Representative Payee to continue to receive monthly cash funds.
Social Security Administration Representative Payee Program
Power Of Attorney (POA) / Advanced Directive – State of Alaska, Veterans Administration
A Power of Attorney is a legal document that allows someone else to make decisions on your behalf. The person you appoint is known as a legal decision maker. The point of time when your appointed person begins making decisions for you is outlined in the legal document for example, upon your signature (immediately), certain dates, or upon your incapacity (when you can no longer make your own decision per a court). In Alaska, two physicians or a psychiatrist can complete an affidavit that states that you lack capacity to make your own decisions at which time your Power of Attorney would be able to make all the decisions you have outlined in the Power of Attorney document to assist you.
Power of Attorney or sometimes known as a durable Power of Attorney tend to be able to make decisions about financial matters such as accessing bank statements, paying bills, or establishing insurance benefits.
A Power of Attorney is also the name associated with a personal decision maker for an Advance Directive. An Advanced Directive is a legal document that allows you to choose a decision maker for your medical care needs and end of life decisions.
The State of Alaska Division of Senior and Disabilities Services will sometimes require a client of Personal Care Services or Medicaid Wavier to have to have a limited Power of Attorney. This type of appointment is limited to very specific duties like signing timesheet for services.
You can choose a person to act on your behalf as your primary decision maker as well as an alternative representative who can assist you if your first choose is unable to provide the assistance. You will want to choose someone who you trust with your information and who knows what kind of decisions you would make for yourself, if you could express your own wishes.
To obtain Alaska Power of Attorney documents: See Alaska Legal Services Family Self-Help at: https://alaskalawhelp.org/issues/life-planning/powers-of-attorneyadvance-directives
To obtain the State of Alaska Division of Senior and Disability Services Limited Power of Attorney at: https://health.alaska.gov/dsds/Documents/pca/Limited_POA.pdf
For assistance with completing a Power of Attorney
Alaska Legal Services – https://alaskalawhelp.org/issues/life-planning/powers-of-attorneyadvance-directives
Other possible resources private legal counsel, case manager, or hospital social worker.
Guardianship/Conservatorship
Guardianship is a legal process to appoint a decision maker for decisions regarding medical/dental care, placement (where you live), employment services and supports, and the services associated with your personal care needs.
Conservator is a legal process to appoint a decision maker for decisions regarding your financial affairs, benefits, and assets.
Guardianship and Conservatorship can be appointed in combined as a Full Guardianship, one or the other, or limited to very specific duties and timeframes.
Guardianship and Conservatorships require a petition to the State of Alaska Superior Court for consideration. The court has 180 days to schedule a court hearing after the receipt of a petition. If there is immediate risk of serious illness, injury, or death without court intervention, a petition for an emergency hearing can be filed with the court. If accepted, the court has 72 hours to schedule a hearing date.
The State of Alaska website has a self-help section for guardianship and conservatorship that provides the required petitioning forms and reporting documents. pg-510 Guardianship Duties is a very useful document for outlining the guardianship process and requirements.
Care Coordinator
Referral for Care Coordinators Services
Care Coordinators are independent business owners/contractors who assist individuals to gain access to Home and Community-Based Medicaid Waiver services (7 AAC 130); Community First Choice services (7 AAC 127); and other state plan services, as well as medical, social, educational, and other services with funding sources other than Medicaid. Care coordinators do this through a person-centered process led by the recipient and the planning team of the recipient’s choosing. Care coordinators also perform targeted case management services, which include helping recipients to complete an application and then submitting the application for Home and Community-Based Waiver services, Community First Choice services, or both. Once an applicant is determined eligible, care coordinators assist applicants with identifying goals, planning for services and selecting service providers. Care coordinators then assist the recipient-directed team to develop an initial support plan. Finally, care coordinators assist recipients to direct the team in reviewing goals and renewing the support plan annually. On-going care coordination is a Home and Community-Based Medicaid Waiver service that includes monthly monitoring of the effectiveness of the support plan. Care coordinators remain in contact with the recipient throughout the support plan year, in manner and with a frequency appropriate to the needs of the recipient. For a recipient receiving only Community First Choice services, a care coordinator provides case management services during the recipient’s support plan year.
Referral Process:
Step 1: Contact SAIL/ADRC
Step 2: Completed PCI Assessment
Step 3: SAIL/ADRC will submit your assessment to the State of Alaska Division of Senior and Disabilities Services (DSDS) for review and authorization to the Division of Public Assistance (DPA) for a voucher to pay a Care Coordinator for assistance with applying for Medicaid Wavier benefits. If results of the PCI Assessment determines that you are likely a candidate for a Medicaid Wavier, SAIL will provide you with a list of possible Care Coordinators in your area.
Provider Directory is available through the State of Alaska Department of Health Division of Senior and Disabilities Services: or by clicking the following link: Care Coordinator Service Directory (DSDS, 2024)
Step 4: It is you or your personal representative’s responsibility to contact and choose a Care Coordinator to work with. Make sure to ask questions and get to know each Care Coordinator before making a final decision. The Care Coordinator should be a person you feel comfortable in talking with about personal topics and working closely on her personal needs.
Southeast Alaska Independent Living (SAIL) / Regional ARDC
Southeast Alaska Independent Living (SAIL) along with all Alaskan Aging Disability Resource Centers (ADRCs) provide the first step in the application process for a Medicaid Wavier or Medicaid Personal Care Services, known as a Person-Centered Intake (PCI) which is a short pre-screening tool that is completed with SAIL staff and submitted to the State of Alaska for review.
Referral Tips:
1) SAIL will accept the “referral form” but the individual seeking assistance will need to initiate the first contact to establish contact with SAIL. SAIL will not call the individual based solely on the referral form submission.
2) Always obtain a Release of Information form from the individual to ensure appropriate coordination of support with respect to confidentiality.
Referral process:
Step 1: If you live in Southeast Alaska, contact your local ADRC site in Juneau at: 907-523-4428; Ketchikan at 907-225-4735; Haines at 907-766-3295 or call toll free: 1-855-565-2017. Someone will answer your call, take down basic demographic information and schedule an Intake.
SAIL conducts the intake/screening within 3 business days or at a time of your choosing. If you’re in Juneau, Ketchikan or Haines they may try to meet face-to-face with the individual seeking the waiver, if possible. For those outside Juneau, Ketchikan or Haines, the intake will be conducted by phone.
Step 2: Proceed with the Intake/Screening at the scheduled time. You can expect to discuss your current disability or medical condition and how this affects you. SAIL will ask questions to determine if you already have Medicaid and if you are receiving any services or support from an agency or other benefits. Then they will ask questions to understand what you need help with, and what you can do for yourself with respect to your own care. Some of the questions may feel quite personal and it may be uncomfortable to admit that you are having difficulties, however, it is important that you respond as truthfully as possible. If you over-state your abilities, the intake/screening results may not reflect your true needs.
Step 3: At the end of the Intake, they will share the preliminary results with you. SAIL also may discuss other options like grant services or benefits which you may be eligible for. This tool is designed to give them an idea if you may qualify for waiver services with the State. The waiver application process takes time and if other options are available and better meet your needs, you may decide to forgo the waiver application process. Regardless of the Intake results, you are always free to apply for waiver services.
Step 4: Depending on what you are interested in pursuing, they will provide you with the information you need to access benefits & services or outline the next steps in applying for waiver services. SAIL will also follow up with you to ensure you’re on the right track to obtaining the services you need. If you hit a roadblock or decide to change course, you can always return to your ADRC for more assistance.
It is important to remember the Intake/Screening does not determine your eligibility for Medicaid or waiver services. That determination will be made by the State after a formal application is submitted. This tool is designed only to give us an idea whether an application for waiver services may be worth your efforts.
Technology
Technology Examples:
1. Social Media Platforms: Zoom, Facebook, and Apple Face Time have become important ways to help older adults stay connected with loved ones and friends.
2. Watches with GPS Capabilities: These smart watches from Apple, Garmin, Fit Bit and others, can often track heart rate, blood pressure and body temperature. Some can also track an aging loved one’s location or will alert 911 if there is a fall.
3. Online Grocery Delivery: This service helps reduce worries about falling when out and about, as the groceries are brought right to the customer’s door. Delivery also comes in handy if inclement weather or sickness keeps an aging elder home.
4. Telehealth: When health questions arise, it’s easy to schedule a medical appointment via computer or smart phone. Telehealth has several advantages, including cost savings, convenience, and the ability to provide care to older adults with mobility limitations, or those without easy access to a local doctor or clinic.
5. Caregiver Management apps: There are a variety of apps that aid with scheduling and communication for family caregivers. Many apps are free, example below CaringBridge App.
6. Call Alert System: There are several products that provide a wrist or necklace style button to push for emergency services such as Medicaid Guardian and Medical Alert. Some services can be established with a plan to call a neighbor or caregiver before notifying paramedics. Alert 1 has a program for fall detection, cell phones, and buttons that can be posted around the home and not worn.
Case Management
Referral to Catholic Community Service – Se Senior Services Case Management
Catholic Community Services – Se Senior Services offers Case Management support to seniors 60+ years-old in Juneau, Ketchikan, Saxman Village, Angoon, Hoonah. Metlakatla and Yakutat. Case Management provides education and assistance in life management skills by assisting to identify problems and solutions through available community and statewide programing to promote seniors with physical or cognitive disabilities to remain at home and live as independently as possible. Support is free to the senior.
Tips:
- Case Managers are familiar with the services and programs. They can help guild you toward services but do need your help to get you set up with support. They cannot do it all alone.
- Be patient, there tends to be a great deal of applications for many social services programs.
- Program is private and grant funded aimed at those who are 60+ years and older and open to all seniors requesting support.
Referral:
Step 1: Call Catholic Community Services. (907) 463-6195 or (877) 563-6195 Toll-Free
Step 2: Completed Intake process by phone or in-person.
Step 3: The Case Manager would like to visit directly with you either face-to-face or by phone. The Case Manager will likely schedule with you a follow-up appointment to complete the Intake documentation.
For additional information: https://www.ccsak.org/case-management.html
Catholic Community Service, Inc.
1803 Glacier Highway
Juneau, AK 99801
Telephone: (907) 463-6100
Email: ccsak@ccsak.org