I’m an RN working in IDD, and one thing I don’t think gets explained well to physicians is how the Surrogate Decision-Making Court (SDMC) actually works in practice.

For anyone unfamiliar, SDMC is used in NY when a person with intellectual/developmental disabilities doesn’t have capacity and doesn’t have an available surrogate to consent for certain medical decisions.

A few things I wish more providers understood:

• Your recommendation carries a lot of weight. The committee heavily relies on the clinical justification you provide. If it’s vague or incomplete, it can delay decisions.
• Clarity matters more than length. “Patient needs procedure” isn’t enough. They’re looking for:
  • diagnosis
  • why the treatment is necessary
  • risks/benefits
  • what happens if it’s not done

The Certificate of Medical Need (this is where things often get stuck)

One of the biggest hang-ups I see is the SDMC Certificate of Medical Need form that the physician completes.

A few practical points:

• This form is essentially your formal clinical justification for the request
• It needs to clearly explain why the intervention is necessary—not just what is being requested
• If it’s incomplete, vague, or missing key details, the case can be delayed or sent back

Helpful to include:

• The specific condition/diagnosis
• Why this treatment/procedure is indicated now
• Risks vs. benefits
• What could happen if the treatment is delayed or not done
• Any less restrictive alternatives considered

From the agency side, we’re often chasing this form down or sending it back for clarification—so a thorough first pass saves a lot of time for everyone.

• Timing can be frustrating—but it’s structured. From the outside it can feel slow, but there’s a legal process being followed. Planning ahead helps avoid last-minute issues.
• This often comes up with things like:
  • dental procedures under general anesthesia
  • psychotropic medications
  • invasive or elective procedures
• Communication with the RN/agency is key. We’re usually coordinating the paperwork, scheduling, and follow-up—so when we’re aligned, the process goes a lot smoother.

I think there’s a big gap between how this process looks on paper vs how it actually plays out in real life.

Curious—have any providers here gone through SDMC and found it confusing?

I’m gonna say this respectfully because I know DSPs are overworked too… but some of these things make nursing 10x harder:

• Meds being poured before the nurse reviews changes
• “They’ve been like that all day” but no one documented or called
• Vitals taken once and never rechecked
• Reporting vague symptoms like “they’re off” with no details
• Not following positioning or aspiration precautions consistently

None of this is about blaming—it’s a systems issue. But these are the exact things that turn small problems into hospitalizations.

Curious—what would DSPs say nurses do that frustrates them?

Pulmonary Function Tests (PFTs) come up a lot for people with asthma, COPD, and sometimes for medication monitoring (like amiodarone). But many staff and even some nurses aren’t always sure what these tests actually measure or why providers order them.

What Are Pulmonary Function Tests?

Pulmonary Function Tests (PFTs) measure how well the lungs work.

They evaluate:

* How much air you can breathe in
* How much air you can breathe out
* How fast you can blow air out
* How well oxygen moves into the blood

Used for:

* Asthma
* COPD
* Restrictive lung disease
* Pulmonary fibrosis
* Medication monitoring
* Shortness of breath workups
* Pre-surgery clearance
* Neuromuscular disorders

Common Parts of PFT Testing

1. Spirometry

Most common test.

The person takes a deep breath and blows out hard and fast into a tube.

This helps diagnose:

* Asthma
* COPD
* Airway obstruction
* Restrictive lung disease

Sometimes they do it before and after a bronchodilator to see if breathing improves.

2. Lung Volumes

Measures how much air the lungs can hold.

Used for:

* Restrictive lung disease
* Neuromuscular disorders
* Severe COPD
* Scoliosis affecting breathing

3. Diffusion Capacity (DLCO)

Measures how well oxygen moves from lungs into the bloodstream.

Used for:

* Pulmonary fibrosis
* Emphysema
* Pulmonary hypertension
* Medication monitoring (especially amiodarone)

Medications That May Require Pulmonary Monitoring

You may see PFTs ordered for people on:

* Amiodarone
* Montelukast Sodium
* Methotrexate
* Nitrofurantoin (long-term)
* Bleomycin
* Some chemotherapy
* Some immunosuppressants

Amiodarone especially — that medication requires monitoring of:

* Lungs
* Thyroid
* Liver
* Eyes
* Heart (EKG)

This comes up a lot with individuals who are on osteoporosis medications like alendronate (Fosamax), risedronate (Actonel), ibandronate (Boniva), or zoledronic acid (Reclast) — providers sometimes talk about a “drug holiday”, and staff/families think the medication was discontinued by mistake.

It’s actually often intentional.

What Is a Drug Holiday?

A drug holiday is when a provider intentionally stops an osteoporosis medication for a period of time after several years of treatment, then may restart later.

This is most common with bisphosphonates because these medications stay in the bone for years even after stopping them.

So the medication keeps working even when it’s not being taken.

Common Bisphosphonates

These are the meds most associated with drug holidays:

• Alendronate (Fosamax)
• Risedronate (Actonel)
• Ibandronate (Boniva)
• Zoledronic acid (Reclast)

Denosumab (Prolia) is different — it usually should NOT be stopped suddenly without a plan.

Why Do Drug Holidays Happen?

Bisphosphonates are effective, but long-term use has been associated with rare side effects like:

• Osteonecrosis of the jaw (ONJ)
• Atypical femur fractures
• Over-suppression of bone turnover
• Esophageal irritation (oral meds)

Because the medication stays in bone for a long time, providers sometimes:

• Treat for several years
• Stop medication for a period
• Monitor bone density
• Restart later if needed

Typical Timeline (General Idea)

This varies by provider and patient risk, but commonly:

Medication	Typical Treatment Before Holiday
Alendronate	5 years
Risedronate	5 years
Ibandronate	3–5 years
Zoledronic acid	3 years

After that, provider may consider:

• Drug holiday
• Continue therapy if high fracture risk
• Switch medications
• Repeat DEXA scan
• Monitor bone density

Who Might Continue Without a Drug Holiday?

People at high fracture risk may stay on therapy longer:

• History of fractures
• Very low bone density
• Chronic steroid use
• Wheelchair bound
• High fall risk
• Advanced age
• Severe osteoporosis
• Neuromuscular disorders
• Long-term seizure medications
• Non-ambulatory individuals

This is very relevant in the IDD population.

Monitoring During a Drug Holiday

During a drug holiday, providers often monitor:

• DEXA scans
• Calcium
• Vitamin D
• Fractures
• Height loss
• Back pain (possible compression fractures)
• Mobility changes
• Falls
• Bone pain

If bone density worsens or fractures occur, medication may be restarted.

Important Nursing / IDD Considerations

In IDD populations, many individuals have high osteoporosis risk due to:

• Anticonvulsants
• Limited mobility
• Wheelchair use
• Low vitamin D
• Poor nutrition
• Tube feeding
• Long-term steroids
• Low body weight
• Down syndrome
• Cerebral palsy
• Hypogonadism
• Thyroid disorders

So sometimes providers do NOT give drug holidays in these populations because fracture risk is high.

Very Important Note About Prolia (Denosumab)

Prolia is NOT a bisphosphonate and should not be stopped without a plan.

Stopping Prolia suddenly can lead to:

• Rapid bone loss
• Rebound vertebral fractures
• Multiple spinal fractures

If Prolia is stopped, providers often:

• Transition to a bisphosphonate
• Monitor closely

This is very important and often misunderstood.

Quick Summary

Drug holidays are usually considered for:

• Alendronate
• Risedronate
• Ibandronate
• Zoledronic acid

Usually after:

• 3–5 years of therapy

Not usually for:

• Prolia (denosumab)
• High fracture risk patients

Monitoring includes:

• DEXA scans
• Vitamin D
• Calcium
• Fractures
• Falls
• Height loss
• Back pain

IDD Nursing Tip

If you see:

• Osteoporosis medication stopped after years
• No new medication started
• Provider note mentions “drug holiday”

It may be intentional, not an error — but it’s always good to confirm.

Also important to track:

• Last DEXA scan
• Vitamin D levels
• Calcium intake
• Fall risk
• Mobility changes
• Fractures
• Dental issues (ONJ risk)

Hearing aids are very common in aging populations and some individuals with developmental disabilities, but hearing aid care and maintenance often gets overlooked. When hearing aids aren’t working properly, the person may appear:

* Confused

* Non-compliant

* Ignoring staff

* Agitated

* Withdrawn

* “Behavior changed”

* Not following directions

Sometimes the issue is simply: **they can’t hear**,

**Why Hearing Aid Care Is Important**

If hearing aids are not working or not worn:

* Communication decreases

* Isolation increases

* Confusion increases

* Falls may increase

* Behavior issues may increase

* Safety risks increase

* Staff may think person is being non-compliant

* Depression and withdrawal can occur

Hearing loss is often mistaken for:

* Dementia

* Behavior problems

* Noncompliance

* Cognitive decline

* Psychiatric issues

**Daily Hearing Aid Care Basics**

**1. Check That They Are In**

Sounds obvious, but very common issue:

* Hearing aids left in room

* In wrong ears

* In pocket

* In denture cup

* In tissue/napkin

* In bed

* In laundry

Many “behavior issues” are actually **hearing aids not in.**

**2. Check Batteries**

Very common problem.

Signs batteries are dead:

* Hearing aid on but not working

* Person tapping ear

* Saying “what?”

* Turning head to hear

* Removing hearing aid

* Whistling sound

* Intermittent sound

* Staff saying “they’re ignoring me”

Many hearing aids use **small button batteries** that need frequent replacement.

**3. Clean Daily**

Ear wax blocks hearing aids easily.

Clean:

* Ear mold

* Tubing

* Speaker area

* Wipe with dry cloth

* Remove wax buildup

* Use cleaning tool (often comes with device)

Wax is the **#1 reason hearing aids stop working.**

**4. Store Properly at Night**

Usually:

* Remove at night

* Store in labeled container

* Open battery door (prevents moisture buildup)

* Keep away from water

* Keep away from heat

* Keep away from pets (dogs LOVE chewing hearing aids)

**Common Hearing Aid Problems**

**1. Ear Wax Impaction**

Very common.

Signs:

* Hearing aid not working

* Person pulling at ear

* Hearing suddenly worse

* Whistling

* Feedback noise

* Behavior changes

* Balance issues

* Ear pain

Sometimes the hearing aid is fine — **the ear is blocked with wax.**

**2. Feedback / Whistling**

Usually caused by:

* Loose hearing aid

* Ear wax

* Poor fit

* Hearing aid not seated correctly

* Cracked tubing

* Volume too high

**3. Moisture Damage**

Hearing aids do not like:

* Shower

* Rain

* Sweat

* Humidity

* Dropping in sink

* Washing machine

* Dropping in toilet (happens more than you’d think)

**4. Lost Hearing Aids**

Very common.

Common places they get lost:

* Bed sheets

* Laundry

* Trash

* Meal trays

* Napkins

* Bathroom sink

* Pockets

* Outside

* Hospital visits

* Day programs

Hearing aids are **very expensive**, so this becomes a big issue.

**IDD / LTC Signs of Hearing Problems**

If someone:

* Stops responding to name

* Turns TV volume way up

* Stops participating

* Seems confused

* Withdraws socially

* Becomes more aggressive

* Doesn’t follow directions

* Says “what?” a lot

* Watches people’s lips

* Turns head to one side to listen

* Removes hearing aids

* Refuses to wear hearing aids

* Has more falls

* Appears to have cognitive decline

**Always check hearing aids and ears before assuming behavior or dementia.**

**Nursing / Staff Tips**

* Label hearing aid containers

* Check hearing aids every morning

* Check batteries regularly

* Clean daily

* Remove at night (if ordered)

* Store safely

* Check ears for wax

* Document when not worn

* Report damaged hearing aids

* Keep spare batteries

* Educate staff

* Check hearing aids before appointments

* Check hearing aids if behavior changes

**IDD Nursing Tip**

If someone suddenly has:

* Behavior changes

* Increased aggression

* Withdrawal

* Not following directions

* “Acting confused”

* More falls

* Not responding

* Staff saying “they’re ignoring me”

**Check:**

1. Are hearing aids in?

2. Are batteries dead?

3. Are hearing aids clean?

4. Is there ear wax impaction?

I’ve seen full psych evaluations ordered when the issue was **dead hearing aid batteries.**

**Honestly…**

In IDD and long-term care, a lot of what looks like:

* Behavior

* Dementia

* Confusion

* Noncompliance

Is actually:

* Pain

* Constipation

* Infection

* Vision problems

* Hearing problems

* Dental problems

* Medication side effects

Always check the **basic medical and sensory stuff first.**

Long-term antipsychotic use can contribute to osteoporosis, especially in individuals with developmental disabilities.

Why antipsychotics affect bones:

Some antipsychotics increase prolactin, which can reduce estrogen/testosterone levels, which can lead to bone loss.

Antipsychotics most associated with increased prolactin:

• Risperidone
• Paliperidone
• Haloperidol
• Some older antipsychotics

Risk factors for osteoporosis in individuals on antipsychotics:

• Long-term use
• Limited mobility
• Poor diet
• Low vitamin D
• Anticonvulsants
• Steroids
• Low body weight
• Smoking
• Little sun exposure

This is why many individuals in group homes end up on:

• Calcium
• Vitamin D
• Prolia
• Reclast
• Alendronate

I have 7 cases of Kate Farms strawberry flavor 1.4 (not pediatric) that I would like to donate.

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Most have expiration dates of Oct. 2026 but a couple are Sept. 2026. I'm in Rhode Island and would prefer to meet someone somewhere rather than ship, if possible. I will try to cross post to reach more people that may want this. Message me if interested.

Let’s say something that a lot of IDD nurses feel, but don’t always say out loud:

Nurses are often one of the last groups considered in agency decision-making.

Schedules change. Policies roll out. Trainings get assigned. Systems get implemented.

…and nursing finds out after the fact.

But here’s the disconnect:

Nurses are the ones responsible when things go wrong.

We are expected to:

• Catch clinical decline early
• Prevent hospitalizations
• Interpret vague symptoms
• Support DSPs in real time
• Answer for outcomes during reviews

So how does it make sense that we’re not consistently included at the front end?

What happens when nursing is an afterthought:

• Medical risks get overlooked in planning
• Policies don’t reflect real clinical workflows
• DSPs don’t get the right level of training
• Follow-up systems fall apart
• Preventable issues escalate

This isn’t about ego—it’s about safety

IDD care is not just social support. It is medically complex, often subtle, and high-risk when misunderstood.

When nursing input is missing, the system becomes reactive instead of preventative.

What needs to change:

Nurses need to be:

• Included in program and policy development
• Involved in training design—not just delivery
• Consulted before clinical systems are implemented
• Recognized as leaders—not just support staff

And nurses need to step into that role, too

This isn’t just on agencies.

We have to:

• Speak up in meetings
• Offer clinical insight proactively
• Take ownership of education and systems
• Advocate for our role beyond “tasks”

Final thought:

If nursing is brought in last, care will always be catching up instead of staying ahead.

And in IDD—that’s where risk lives.

One of the biggest mistakes I see in IDD settings:

Nurses teach the way they were taught instead of teaching in a way DSPs can actually use.

DSPs are not nurses—and they’re not supposed to be.But they are the ones at the bedside 24/7.

If our teaching doesn’t stick, care breaks down fast.

Tips for Nurses Teaching DSPs

1. Stop teaching “what”—start teaching “why.”

If staff only memorize steps, they freeze when something changes. When they understand why, they adapt.

2. Use real scenarios—not textbook language

Skip:

“Monitor for signs of aspiration”

Say:

“If they cough while eating or sound wet after drinking—stop and tell someone immediately.”

3. Teach in small pieces

No one learns from a 1-hour info dump. Break it into:

• 5–10 minute focused teaching
• Repeat it often
• Reinforce during real care moments

4. Show, don’t just tell

Demonstrate:

• Positioning
• Feeding pace
• Equipment use

Then have them teach it back to you.

5. Normalize questions

If staff are afraid to ask questions, they will guess. And guessing in healthcare is where mistakes happen.

6. Connect everything to real risk

Staff engagement changes when they understand:

“This is how someone aspirates.” “This is how constipation turns into an emergency.”

Now it matters.

7. Don’t confuse sign-offs with competency

A signature doesn’t mean understanding. Watch staff actually perform the task.

8. Reinforce in the moment

The best teaching doesn’t happen in a classroom. It happens:

• During meals
• During med pass
• During routine care

The reality:

Most preventable incidents don’t happen because staff “weren’t trained.”

They happen because:

• Training didn’t stick
• It wasn’t practical
• Or it wasn’t reinforced

Good teaching = safer people

When DSPs understand what they’re doing and why:

• They catch changes earlier
• They respond faster
• They prevent escalation

Final thought:

If you’re an IDD nurse, you’re not just providing care.

You’re shaping how care is delivered when you’re not there.

Teach like it matters—because it does.

If you’ve been told you need osteoporosis treatment, the options can feel overwhelming. These meds fall into different categories and are used for different situations.

Here’s a clear breakdown

Tymlos (abaloparatide)

• Anabolic
• Builds new bone
• Up to 2 years
• Daily injection

Forteo (teriparatide)

• Anabolic
• Builds new bone
• Up to 2 years
• Daily injection

Evenity (romosozumab)

• Dual
• Builds bone + slows breakdown
• 12 months
• Monthly injections

Raloxifene

• SERM
• Mimics estrogen to reduce bone loss
• Long-term
• Daily pill

Risedronate

• Bisphosphonate
• Slows bone breakdown
• Long-term
• Weekly or monthly pill

1. Bone-building meds (Tymlos & Forteo)

These are anabolic, meaning they actually create new bone.

Best for:

• High fracture risk
• Prior fractures
• Severe osteoporosis

Consider:

• Daily injections
• Limited to ~2 years
• Need follow-up medication after

2. Evenity (build + protect)

Evenity does both:

• Builds bone
• Slows breakdown

Best for:

• Very high fracture risk
• People needing faster improvement

Consider:

• Monthly injections
• 12-month limit
• Heart/stroke risk warning

3. Risedronate (classic first-line option)

A bisphosphonate that slows bone loss.

Best for:

• First-line treatment for many people
• Preventing further bone loss
• Long-term maintenance after stronger meds

Consider:

• Must take on empty stomach
• Stay upright after taking
• GI side effects possible

4. Raloxifene (estrogen-like option)

A SERM (Selective Estrogen Receptor Modulator)

Best for:

• Postmenopausal women
• Lower fracture risk cases
• Those who may benefit from breast cancer risk reduction

Consider:

• Doesn’t build bone (prevents loss)
• Risk of blood clots
• Can worsen hot flashes

Which is “strongest”?

Not a perfect comparison, but generally:

Evenity → fastest + most aggressive

Tymlos/Forteo → strong bone-building over time

Risedronate → maintains bone / slows loss

Raloxifene → milder option for specific cases

Treatment sequencing (super important)

A lot of people don’t realize this:

Stronger meds are often followed by maintenance meds

Examples:

Tymlos → then risedronate

Evenity → then bisphosphonate

Forteo → then antiresorptive

Without follow-up, bone gains can be lost

Side effect overview (real-world)

Tymlos / Forteo:

• Dizziness
• Increased heart rate
• Injection site issues

Evenity:

• Joint pain
• Injection reactions
• Cardiovascular warning

Risedronate:

• Heartburn / GI irritation
• Must follow strict dosing instructions

Raloxifene:

• Hot flashes
• Leg cramps
• Blood clot risk

How doctors usually decide

It depends on:

Fracture risk (low vs high vs very high)

Age and menopause status

Heart history (important for Evenity)

Ability to tolerate pills vs injections

Insurance coverage

Bottom line

Tymlos/Forteo/Evenity = build bone (used for higher risk)

Risedronate = maintain + prevent loss

Raloxifene = selective option for certain women

Most people end up on more than one of these over time

Curious what others experienced:

• Which medication were you started on and why?
• Did you switch at any point?
• How were the side effects?

There’s something happening in the IDD field that we don’t talk about enough:

Too often, medical training is being delivered by people who are not medical professionals.

And that’s a problem.

In many agencies, DSPs are being trained on:

• Seizure recognition and response
• Aspiration risk and feeding protocols
• Infection prevention
• Medication administration concepts

…by individuals who don’t have clinical training or real-world medical accountability.

That’s not a knock on those professionals—it’s a gap in how we’re using nurses.

IDD Nurses Are Not Just Task-Oriented Staff

We are:

• The clinical safety net
• The ones interpreting subtle changes in condition
• The ones responsible when something is missed

So why are we not consistently leading education?

Here’s the reality:

When training is disconnected from clinical judgment:

• Early warning signs get missed
• Staff follow steps without understanding why
• Preventable hospitalizations still happen

This is where IDD nurses need to step up

Not by waiting to be asked—but by actively taking ownership of education in our agencies.

That means:

• Building structured trainings
• Simplifying complex medical concepts for DSPs
• Reinforcing why protocols matter
• Creating tools that staff can actually use in real time

Because good training isn’t just information…

It’s what prevents:

• Aspiration events
• Missed seizures
• Untreated infections
• Severe constipation
• Dehydration

(Yes—the Fatal Five.)

If we don’t lead this space, someone else will.

And the quality of care will reflect that.

IDD nursing isn’t just about documentation and oversight.

It’s about translating clinical knowledge into everyday care.

Final thought:

If you’re an IDD nurse, you are already an educator—whether your title says it or not.

The question is: Are you using that role intentionally?

OPWDD requires staff to complete and maintain competency in specific trainings to ensure safe, effective care.

Required trainings often include:

• Medication administration (AMAP)

• Abuse & neglect prevention

• CPR & First Aid

• Infection control

• SCIP/R behavioral supports (if applicable)

• Fire safety & emergency procedures

Compliance risks include:

• Expired certifications

• Missing training records

• Staff performing tasks without required training

• Lack of competency validation

Training isn’t just a requirement — it’s what keeps people safe.

Reflection Question: How does your program track and verify staff training compliance?

A lot of people think only steroids cause osteoporosis, but there are actually several medication classes that can contribute to bone loss.

Common medications that can reduce bone density:

• Steroids (prednisone)
• Anticonvulsants (phenytoin, phenobarbital, carbamazepine, valproate)
• Proton pump inhibitors (omeprazole, pantoprazole)
• SSRIs (some evidence)
• Antipsychotics
• Depo-Provera
• Aromatase inhibitors
• Some thyroid medications if dose too high
• Heparin (long-term)
• Loop diuretics (Lasix)

In IDD and residential settings, I most commonly see osteoporosis in people on:

• Long-term antipsychotics
• Long-term seizure medications
• PPIs for years
• Steroids
• Limited mobility
• Low vitamin D
• Poor nutrition

So when someone has osteoporosis in a group home, it’s usually multiple risk factors, not just age.

Overview

Turner syndrome affects females and results from partial or complete absence of one X chromosome.

Key medical risks

• Congenital heart defects
• Infertility
• Thyroid disorders
• Hearing loss

Behavioral & functional traits

• Average intelligence (often)
• Challenges with spatial reasoning
• Social immaturity in some individuals

DSP care considerations

• Support hearing evaluations
• Encourage independence with support for executive functioning
• Monitor for fatigue or cardiac symptoms

Nursing priorities

• Cardiac screening history
• Thyroid monitoring
• Hearing assessments

Discussion

Have you seen subtle learning differences affect independence?