The Act 150 program: help at home for adults 18 to 59 with physical disabilities

What is the Act 150 program?

Act 150 is a Pennsylvania program that pays for help at home for working-age adults with physical disabilities. It is named for the 1986 state law that created it, and it is run today by the Department of Human Services.

It fills a real gap. Medicaid's Community HealthChoices helps adults who qualify financially for Medicaid. Area Agencies on Aging focus on people 60 and older. But what about someone in their 30s, 40s or 50s with multiple sclerosis, a spinal cord injury, muscular dystrophy, cerebral palsy or the effects of a stroke, who earns or owns too much for Medicaid and still needs help every day? Act 150 was built for that person.

The program is built around one idea: you direct your own care. You decide how things are done, and an attendant provides the hands.

Who can get help through Act 150?

According to the Department of Human Services, you must:

• Live in Pennsylvania.
• Be 18 through 59 years old.
• Have a physical condition, confirmed by a doctor, that is expected to last at least 12 months or may be life-limiting.
• Need the level of daily help a nursing home provides, such as ongoing help getting around and with daily care because of the physical disability.
• Be able to direct your own care: choosing, supervising and if needed letting go of an attendant, and handling your own money and legal matters.
• Apply for Medicaid and be found not financially eligible.

Being able to direct your own care is central. Adults whose main need comes from an intellectual disability, dementia or a brain injury that affects decision-making are usually served by other programs.

How is Act 150 different from Community HealthChoices?

The main difference is money. Community HealthChoices is Medicaid, so you have to qualify financially for Medicaid. Act 150 is paid for by the state for people who do not meet Medicaid's financial rules.

The two programs are connected. If you later qualify financially for Medicaid, your services move to Community HealthChoices. And someone who loses Medicaid coverage because income or savings went up may be able to apply for Act 150, subject to any waiting list.

What does Act 150 pay for?

Act 150 covers three things:

• Personal assistance: help with bathing, dressing, eating, using the toilet, moving from bed to chair and getting around, help taking medications as you direct, meal planning and cooking, grocery shopping, laundry and housekeeping, and help getting to appointments and other places.
• An emergency call button you can press to get help when no one is there.
• A service coordinator who writes your service plan with you, helps you find other medical, social, education and housing resources, and checks that your services are happening.

Act 150 does not pay for nursing or therapy, and it does not pay a spouse to provide care. It also expects you to use other benefits first, such as private insurance or Medicare home health, before it pays.

Will you have to contribute toward Act 150 services?

You may be asked to, based on your income. The Department of Human Services says your share will never be more than the total value of the services you receive.

Your service coordinator works out the amount with you when you enroll and again if your income changes. Some disability-related and medical expenses can be subtracted first, so keep receipts for equipment, home changes, medications and other disability-related expenses and bring them to the meeting.

How do you apply for Act 150?

The process has several steps, but the enrollment broker walks you through each one.

1. Call the Independent Enrollment Broker at 1-877-550-4227 (TTY 711), Monday through Friday, 8 a.m. to 6 p.m., or start online at paieb.com.
2. A home visit. Someone from the enrollment broker visits, starts a needs assessment, and explains your rights, including your right to appeal and to direct your own care.
3. Your choice of services. You choose among nursing home care, Medicaid home care, Act 150 or no services. Your choice is written on a form.
4. Pick a service coordination organization from a list you are given.
5. Doctor's form. Your doctor fills out a form confirming your medical needs. The enrollment broker can help.
6. A decision on level of need. A separate office decides whether you need nursing-home-level help.
7. The financial review. You complete the Medicaid financial paperwork. Act 150 requires this step even though it is for people who do not qualify for Medicaid.
8. Your service plan. Your service coordinator writes a plan with you and arranges services.

For general questions, the Department of Human Services' Office of Long-Term Living can be reached at 717-787-8091. If there is a waiting list when you apply, your service coordinator or the enrollment broker will tell you where you stand.

What should you have ready for the first call?

A little preparation makes the call and the home visit go faster:

• Your Social Security number, any insurance cards (private, Medicare or Medicaid) and proof that you live in Pennsylvania.
• The name and phone number of the doctor who knows your condition best, since that doctor will fill out the form.
• A simple description of the help you need each day and when: getting up and dressed, bathing, the toilet, meals, moving from bed to chair, getting to work or appointments.
• Income and savings information for the financial review.
• Receipts for disability-related expenses, which can matter when your share is worked out.

What does Act 150 help look like day to day?

It looks like whatever helps you run your own life. A typical plan might include an attendant for two hours each morning to help with getting up, the bathroom, a shower, getting dressed and breakfast before work. Then an hour or two in the evening for dinner, laundry and getting ready for bed, with the emergency call button for the hours in between.

Someone who does not work outside the home might use midday hours for errands and appointments instead. You decide how tasks are done, and the attendant follows your lead. Your service plan sets the number of hours, and your service coordinator can ask for changes when your needs change, for example after surgery or a new wheelchair.

Should you use an agency or hire your own attendant?

Act 150 lets you choose, and you can combine the two.

• Using a home care agency. A licensed agency hires, trains, schedules and supervises your attendants, and works to send a substitute when someone is out. You still direct how your care is done each day.
• Hiring your own attendant. You are the employer. You find, hire, train, schedule, supervise and if needed let go of your attendants. A payroll service handles paychecks and tax withholding. You will need your own backup plan for sick days.

If you choose to hire your own, you can use agency help until your workers are in place, and you can switch at any time by telling your service coordinator. Some people use an agency for weekday mornings and their own worker for evenings and weekends.

Our page on in-home support for adults with physical disabilities describes how we work with Act 150 clients through an agency. Our guide to private caregivers vs. agencies explains what being an employer involves.

What happens when you turn 60?

If you are enrolled before turning 60, you can choose to stay in Act 150 or move to a program offered by your county Area Agency on Aging. A move is not automatic: county programs such as OPTIONS depend on available funds and on who needs help most. Ask your service coordinator to go over the choices with you well before your 60th birthday.

People who are already 60 or older cannot newly enroll in Act 150. The county Area Agency on Aging, PA Link (1-800-753-8827) or a Center for Independent Living can help them find other services.

How do you choose a provider, and how can we help?

You can choose any qualified provider. Ask your service coordinator which home care agencies work with Act 150 in your county, and talk with two or three using our questions to ask a home care agency. If you work, ask specifically whether the agency can staff early-morning and evening shifts around your job, and what happens if your regular attendant is out on a workday.

It's Your Home Care is a provider for Act 150 in the counties we serve. We follow your lead on how your care is done. Call us at (717) 695-2704 or request a consultation, and we will talk through what help might look like once your services are approved, or answer questions while you are still applying.